Patient Stories

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Heather Van Daele, Patient


I am 32 years old and I live in Lake Zurich, IL. I live with my husband and two boys (ages 4 and 2) and I have worked in the pharmaceutical industry for 10 years up until my last relapse, and have just started back doing consultant work for the same company I use to work for.

I was first diagnosed with TTP in April of 2002, 6 weeks before my college graduation. I was 21 years old and invincible, or so I thought.

I had a scheduled appointment to see my doctor after a car accident. About a week before my appointment, I started to get little dots all over my legs and a nose bleed that just wouldn't stop. Over the weekend, I developed large bruises on the inside of my knees.

Monday morning, I was tired, but I went to class, and then drove to my hometown to see the doctor. She asked me if there was anything knew, so I showed her my legs. She said that I needed to have a CT scan because I was bleeding and she didn't know why. I didn't feel sick, just a little tired….so I figured I might as well get this over with. I went to the hospital, registered, and started taking the gastroview.

When I was walking out of the hospital the left side of my face and all around my mouth, started to go numb. I told my mom, she called the hospital, and they said they had never heard of that and to keep taking the gastroview and come back in two hours. We left for my little sisters softball game, but didn't quite make it there. When we pulled in the parking lot about ten minutes from the hospital, I started throwing up blood. I was slurring my words and I could not stay awake. My mom turned back around and took me back to the hospital. When we got there they said that I needed the CT scan and sent us down for one. I do not remember too much more from this night.

The doctors had told my parents that I had TTP and would be lucky if I made it through the night and that if I did they would discuss where to go from there.

About a week into treatment, I finally was aware enough for my parents and doctors to explain what was going on. I had never heard of TTP, I had never really been sick with anything. It was a lot of information to take in, but my family was there to help me through it.

I received plasmapheresis every day, but they could not get my platelets above 12,000. They increased my pheresis to twice a day and increased the volume of plasma I was receiving. After being in the hospital for two months, my doctors decided we should try Imuran and Vincristine. I started both chemotherapy drugs, with not much change. After about another month in the hospital, suddenly my numbers jumped up, I also got hit with all the other side effects of chemo (nausea, constipation, hair loss). But, my platelets went up, first to 60,000 then to 100,000 and so on. Success!

I was sent home and tapered off of the twice a day pheresis to once a day, then to every other day, until I was off completely. This experience forever changed me, at 21 I was lucky enough to realize how precious life is and how quickly it can change.

Since then, I relapse about every four years. I got sick again in 2006.

Two years later I gave birth to a healthy baby boy and then his little brother joined us two years after that. I get monitored regularly and just before finding out I was pregnant with baby number two, my Adamts13 test started to drop.

Then, a month after I quit breastfeeding, I noticed a large bruise on my arm, went to get my platelets checked, and they were at 13,000. This was in November of 2011. Same treatments as before, except this time I seemed to respond quicker, only to relapse a couple of days later. I was home the month of January and most of February, receiving pheresis daily.

Next, I came down with a fever and pain all over. Back to the hospital we went, where I was diagnosed with Endocarditis, Meningitis, a 4 cm mass in my right atrium, and two large pulmonary embolisms in my left lung. Again, I was sent to Northwestern Memorial in the city, my central line was removed, I was given 4 units of FFP to bring my platelets to a safe range, and I had open heart surgery on March 9, 2012.

I stayed on the chemo the whole time, and continued taking the chemo until October of 2012. It has now been four weeks of no chemo and my platelets are still at 250,000!

My family has been right beside me learning about the disease and what we can do to beat it! My husband has had to endure taking care of the kids, working, and getting to the hospital to see me, but we have survived. I am thankful to be here to see my boys every day!

I get so nervous whenever I have bloodwork done. Those are the worst five minutes of my day until they bring out the results. For now everything is good. I know that I will probably relapse in a couple of years, but I try not to let that dictate my life.

I am so lucky to have the support of my loved ones. I think that is what got me through every day in the hospital. I will not let TTP rule my life!

To all the other TTP survivors out there….stay strong, stay positive, and don't ever hesitate to get help when you notice something is wrong.

High platelets to you all!!



Kathy Downs
, Mother, Supporter & 2012 Walk to Answer TTP Participant

It was Friday, September 23, 2011. My husband Darcy and I had taken the day off from work to get some things done around the house.  It was pleasant day for September; we had finished our day’s chores, and sat down on the front porch around 6:00 for a cold drink when our phone rang. I went into the house to answer the phone. It was a man whose voice I didn’t recognize. He asked if Trevor was there and I replied that Trevor no longer lived at this residence. He identified himself as a doctor at a walk in clinic, and said it was urgent that he reach Trevor. I assured him that I would have Trevor call him as soon as I could. I got hold of Trevor soon after and gave him the doctor’s message. Trevor told me he had been sick for a few days and had some medical tests done that day.  I hung up the phone so he could call the doctor. Trevor called me right back. He said that he needed to get to a hospital as soon as possible because his blood counts were low, and that he wasn’t to drive himself. His girlfriend Meghan lived closer than us so she drove him to the hospital.  We met Trevor and Meghan at the hospital emergency. I was shocked when I first saw him there. His eyes were dilated, he was jaundice. He seemed weak, and Darcy immediately grabbed a wheelchair for him.

Trevor was admitted at once. The tests the doctor had taken earlier that day were available. More blood tests and examinations revealed a platelet count of 8, and a very strange rash on his body. Trevor didn’t seem present at times, and then suddenly he was back with us. Soon, a hematologist was summoned, and he asked Trevor some questions, but right then, Trevor’s answers were making no sense whatsoever. I was panicking. I knew something was horribly wrong.

Trevor’s vitals took a turn for the worse, and he was put in special area for observation. Darcy and I were asked to join the hematologist in a private room for a discussion. That’s when we were told our son had TTP and was in serious danger. They were giving him plasma, blood transfusions and steroids but the treatment he really needed was plasmapherisis. He would have to be moved to the Foothills Medical Center for that. He would go by ambulance as soon as possible. It was explained to us that even with plasmapherisis, he was in great danger of organ failure and possibly death.

Soon after, the ambulance took Trevor to the Foothills Medical Center directly to the ICU. We followed in the car. It was just after midnight when we arrived. The nurse we talked to said he was stable, and that they were preparing him to start plasmapherisis, but we couldn’t see him yet. We waited for what seemed like an eternity. Then we were asked to come into the ICU area. Once inside the waiting area, we saw there was a flurry of activity in a room next to us. Again I had a horrible feeling. Finally a doctor came to see us. He broke the news. Trevor was in cardiac arrest. They were doing CPR to try to resuscitate him. Once again we waited. At times we were allowed inside where Trevor was, and they worked around us. For an hour and a half they tried so very hard to save my son’s life.  But to no avail. He was gone by 3:30 am.

 The three of us were in total shock. I couldn’t believe what had just happened. How could it be? It happened so quickly. I had never heard of TTP before.  In a short time our lives were changed forever. He was so precious. It was impossible to comprehend.

 Trevor was 32 years old, active and seemingly healthy. He was a civil engineer, and was working hard at a career he seemed to enjoy. In the last few months he had travelled to San Diego with Meghan, travelled to Dallas with his brother Jeremy, and had come with us on a family cruise. He had a life. He was kind and gentle, considerate and fun, with lots of friends and family who loved him. He liked to run and ride his bike. He just joined a hockey league. How could he be gone? Just like that? (A year later I am still puzzled)

 We asked lots of questions, but the clues were vague at best. He had gone running with Meghan on Monday night. He told her he wasn’t feeling well and wanted to take it easy, but he still felt like running. I talked to him Tuesday afternoon, but he never even mentioned being sick. He had gone for lunch with one of his buddies from work on Wednesday; he didn’t eat all his lunch which was unusual for him. He said he had been feeling a little sick to his stomach. Darcy talked to him Wednesday morning, he never mentioned being sick.  Because of how fast he deteriorated, the doctor seemed to think the TTP probably came on very quickly in Trevor’s case; likely over the course of a few days. It is thought that he may have had some kind of infection that brought it on. We will never know for sure. The pathology tests revealed nothing. It will always be a puzzle to us. I am certain, though, if Trevor knew how serious it was, he would have gone for medical help much sooner.

This has truly been the most difficult year of our lives, even though many special events occurred to memorialize our son. From the time he was small, he instinctively understood how important relationships were in his life.  That is his true spirit, the guy he was. His spirit lives on. The people he touched in his life have been propelled to remember how he made the world better.  In the town of Strathmore, where he worked to develop a subdivision, the town council voted unanimously to name a street in his honor. In the city of Airdrie where he worked as well, there is a rock with a plaque in a park honoring his memory.  His employer, Urban Systems, set up an Engineering Scholarship in his memory. His legacy goes on.

Trevor was a blood donor from the time he entered post-secondary. There have been countless blood donor clinics in his honor in the last year. I can’t begin to know how many there have been, I just know we keep getting cards from Canadian Blood Services. We have set up a couple honor clinics ourselves, and will continue to do so. It is particularly gratifying when we know that other TTP patients may benefit as well.

We are incredibly proud of Trevor. We are proud that his life is so inspirational. 

Something we could never let pass by us was the fact that Trevor passed away from TTP early in the morning on Sept 24, 2011, and ironically, later that day was the first annual Walk to Answer TTP. The second annual walk seemed like the perfect way to mark one year since his passing. The Walk gave many of us a chance to get through a difficult anniversary in a positive way.

When Darcy and I registered for the Walk we set up team Walking for Trevor. We talked about setting a high goal for ourselves. We even shook our heads a little when we put in a $5000.00 goal saying, well, we won’t do it if we don’t try! We didn’t know how many walkers we would have. I had already talked with many of Trevor’s friends and family so I knew we could count on a few for sure. But on walk day we had 27 registered walkers and 38 if you count the people who decided to walk with us in support without registration. Last I checked we had over $13,000.00 in fundraising. We have been overwhelmed with the support we received. We believe it is Trevor’s inspiration at work.

Our efforts will never bring Trevor back to us, but it feels right to fight back against TTP. Hopefully we will be able to help people suffering the effects of TTP now or in the future. Maybe we can raise awareness. If Trevor knew the symptoms, he might be alive today, who knows? One thing is for sure, more research is needed, because TTP is a nightmare for anyone whose life it touches. It was for us.



Chantel Chaisson, Patient

My name is Chantel Chaisson, I am 29 years old and a resident of Toronto; this is my story of how I became a TTP survivor!

In the Fall of 2005 I underwent a surgery that would change my life in so many ways. After years of struggling with weight issues at 22 years old and 325 lbs., I decided to undergo gastric banding weight loss surgery. Although I had never had any serious medical issues up until that point I knew I was headed down a long road of health complications if I didn’t do something. After researching the surgery I was to have I was diligent in losing as much weight as possible before the surgery and completed my Dr’s physicals as required. Sometime in August before the surgery I was put on a higher dose birth control pill to ensure its effectiveness due to my being overweight. I was very excited the days leading up to the weight loss surgery as I was ready to turn a new leaf and start placing more importance on my health. I was also nervous as I had never even been overnight in the hospital before never mind a surgical procedure. I passed the Dr’s physical weeks before the surgery date with no noted issues but nothing prepared us for what was to be found on surgery day...

I remember waking up from my laparoscopic surgery knowing something was not right. I knew that something had not gone according to plan. My surgeon came to my bedside to explain that they were unable to insert my gastric band because they found a very large ovarian cyst that would need to be removed first. After several tests that day the Dr’s estimated that this cyst had been there for quite some time based on the size. I was then scheduled for a double surgery in the next couple of weeks to remove the cyst and place the band. Upon removing the ovarian cyst, five litres of fluid was drained from it, it was massive and taking up most of my body cavity. Because of the length of the surgery I was kept overnight in the hospital and needed a catheter. I was released the next day to recover slowly at home. I was recovering well at home the first few weeks taking it easy and relaxing. Almost four weeks to the day of surgery I started feeling very unwell. I was having very bad headaches all day, extreme exhaustion, sensitivity to light and sound and no appetite. All I wanted to do was sleep. Two of my family members took me to a clinic where a urine sample identified that I had a bad urinary tract infection (probably from the post surgery catheter). I was given antibiotics and sent home. That night I noticed bruising on my arms and legs. When I woke up the next morning I was even worse. I remember thinking I have to take those antibiotics so I can start feeling better. I stumbled into the kitchen not realizing the severity of my state through blurred vision, and passed out at my kitchen table. Luckily my cousin was home and called another family member to help her get me to the hospital. I don’t remember getting into the car or being admitted to the hospital.

The triage nurse and doctors were baffled when my blood work came back with such low platelets. I had the symptoms of someone who had just sustained major body trauma and was bleeding out, except there was no blood. Because I was taken to a local community hospital that did not have an extensive hematology unit, I was not properly diagnosed. In fact I was gravely ill while I spent almost a week there and I remember very little. My legs and arms were covered in bruises, petechia, and I was very jaundice. After almost a week, and getting sicker by the minute, I was finally transferred to a big city hospital after much pleading from my mother. I would have been sent sooner had there been more beds available. Once transferred to St. Joseph’s Hospital in Hamilton I was seen by the Head of Hematology and diagnosed within a couple of hours with TTP and subsequently started apheresis treatment. I almost didn’t make it through the night. What a scare for my family. I began receiving twice daily aphaeresis treatments with a whole blood transfusion in between. Much of this part was a blur to me still. After a month in the hospital, two relapses, one grand mal seizure, two central lines and close to forty plasma exchanges/blood transfusions my platelets and creatinine levels started to stabilize. On December 25th 2005 I was able to visit home on a day pass after being hospitalized for a month. I was determined to beat my TTP. I was an out-patient for another month. At first I received daily apheresis treatments which were weaned over time along with the prednisone.
My bout with TTP was a nasty battle, one that without great doctors and solid family of support, I don’t think I could’ve made it thru. I am happy to say I have not relapsed since. I am healthy and happy and am so thankful for my second chance at life.

As a way to try to give back, I work with Canadian Blood Services to encourage and thank donors, because without them I would not be alive today. As with most cases we have no idea what triggered my TTP and I hope to never encounter it again. Going through this medical nightmare has definitely made me listen to my body more, and has made me a stronger person. My heart goes out to those affected by TTP and their loved ones. High platelets to you all! xoxo



Rachael Everhart, Patient

My life finally seemed to be on track after years of struggling with my parents' divorce, my mother's new marriage, a battle with depression, low self esteem, and a teenage pregnancy that landed me a new job as a single mom. My son was four years old, and the light of my life. The demons in my past were slowly fading into the background and I was moving on. I graduated high school early and we finally had our own place. I had my first brand new car, I was paying my own bills, and I had a great job working for a wonderful company. I was planning on enrolling in college the following fall to study to be an ultrasound tech like my mom. Little did I know of what was lurking in my body and how it would change my life forever.

It started with a headache. It wasn't out of the ordinary...I had suffered with headaches since puberty. I wrote it off to being overtired and a little stressed. It wasn't extremely painful...just a very irritating and strong ache. I mentioned it to several people but didn't think much else about it. That was a Saturday. On Wednesday, things started to get a little worse. I noticed several large bruises in odd places...on my hand...my foot...my forearm. Again I just dismissed it, and started to get ready for work.

Then I felt really dizzy and lightheaded and decided that maybe I needed to go to the doctor. Next thing I knew, I was waking up on the floor. I was confused...”how in the world did I end up down here?”  I called my mom and told her what happened and she took me to see a PA at my primary care office. He didn't do much...asked me about where the pain was, and said that I was having a migraine. He gave me a shot of stadol in the office and sent me home. Looking back, I should have mentioned the bruising and the “pinprick” rash on my ankles, but I just wasn't very in touch with my body, and didn't think it was related. If I had mentioned it, maybe he would have recognized the petechia and he would have known it was serious, and requested blood work. Talk about hindsight being 20/20!

I went home and slept for several hours...when I woke up, the headache was still there. I was really aggravated...after several days of dealing with a headache, I was so hoping I would wake up and feel better! I decided that I would just have to suffer with it...maybe it would go away on its own. No such luck.

I got progressively worse...I started blacking out at work, and I was exhausted 24/7. On Saturday, after I had a meltdown over a bowl of soup, I decided I was going to stay the night at my mother's. I don't remember putting my son in the car, or driving across town to her house. Thankfully someone was watching over me and got myself and my son there safely. My mom put me to bed and told me I would feel better in the morning. I hoped she was right, but in my gut I knew she wasn't.

When I woke up the next morning, the headache was still there. After 9 days of stressing and feeling like I was never going to be better...I was suddenly at peace. It was surreal...I remember vividly the color of the bedspread on my old bed...I remember when I walked outside the feeling of fall. I remember seeing my niece sitting at the kitchen table eating toast and smiling and talking about Maggie and the “Ferocious” Beast. I remember being so grateful that I had been blessed to spend 4 years with my son, and I wondered if he would remember me when I was gone. It was as if someone slapped me...I suddenly realized that I was going to die. And I was ok with that. I walked out on the back porch where my mom was sitting and I sat down. When she asked me how I felt, I told her I didn't feel any better. She told me to go back upstairs and lay down and get some rest and she would take me to the doctor the following day. I will never forget my response, or the look on her face, or the feeling of peace that I had when I said it...”If I close my eyes, I'm not going to wake up. I'm going to die.” My mom immediately picked up the phone and called the urgent care center, and we loaded up in the car and headed to the doctor.

On the way there the peace that I had felt before seemed further and further away, and was replaced by something new...panic. It crept up slowly. I felt a feeling in my stomach that started as a quiet hum, and then begin to grow rapidly...it bubbled over and began to take hold of my whole body. My mind was racing...who would take care of my son? Who would take care of my mother when she was old? Would someone tell my son how much I loved him and how he saved me from the person I was becoming? Would he remember the lullabies I sang to him before bed, or the plans that I made for our life? Would he tell his children about their grandmother? Or would he just forget me and struggle without a mother to comfort him? The feeling was terrible...it was as if every fear I had was crushing down on my heart all at once, and I felt completely powerless to stop it.

Meanwhile, my mother pulled into the parking lot of urgent care. Suddenly it was as if I had been hit by a train. My left arm and leg went completely numb. I begin to panic outwardly...screaming to my mother that I couldn't feel my arm. She put the car in reverse and headed to the ER which was right across the street. I could see my mom physically shaking and I felt so bad for her...I remember feeling so guilty for making her so scared.

We walked into the ER and I sat down while my mom checked me in. They didn't react...just told her to sit down and they would call us shortly. As the time ticked by, I began to lose feeling in the side of my face. I remember crying and wishing that they would hurry up. Finally they called us back to fill out insurance papers. I remember feeling so confused...I'm dying, and they're asking for my insurance card!? As I was trying my best to answer the girl's question about my employer and my social security number, my tongue went numb. I began crying hysterically telling my mom that I couldn't talk, I couldn't feel my left side or my mouth. I've never seen her so afraid or so helpless. If the terror in my eyes wasn't apparent, I know the insurance girl could see it on my mother's face. She kept apologizing to us and telling us that it would only be a few minutes. Finally after what seemed like 10 years, a nurse came back and stuck us in a room. Again we waited...and when she finally returned she asked me a million questions that I didn't understand. Was I sexually active? Could I be pregnant? Did I have a history of depression or anxiety? The list went on and on. I remember looking at my mom and wondering why she was asking me these things. I remember looking in the corner of the room and seeing a dead baby hanging from the curtain, dressed in red...a halo around my mother's head...a woman in purple standing below the dead baby with a cane...a red “W” written across the forehead of the nurse asking the seemingly pointless questions...all things that I have never told a soul, until now.

The images were terrifying, but for some reason I knew they weren't real (just fyi...mental status changes and hallucinations are sometimes reported in TTP patients) and I did my best to hide the fact that I felt as though I was losing touch with reality. The nurse was emotionless...too busy today for this girl acting like something was wrong with no visible signs of trauma. She told me that I might need to be admitted to the psych ward for an evaluation and it looked as though I was having a panic attack. I looked at my mom and said “I am NOT crazy! Something is wrong...why is she acting like I'm crazy?”

My mom shook her head and said she didn't know. Again we waited...they asked me to give a urine sample so they could determine whether or not I was pregnant. I went to the bathroom and saw snakes crawling the walls and butterflies in the toilet. I looked in the mirror and wondered if maybe she was right...maybe I was going insane. I tried to shake the mental images of slimy snakes and drowning butterflies, but I couldn't bring myself to give the sample. A nurse stood outside the door and kept knocking and telling me to hurry up. I just couldn't do it. I walked out with an empty cup and she rolled her eyes and told me that they would have to do a catheter. They did...and they drew some blood.

Later, they came in and drew more blood. The nurse seemed a little more concerned and came in several times to tell us they were working on it and the doctor would be in shortly. I remember an older doctor coming in, asking a few questions and then leaving. And then I remember my knight in shining armor...a young doctor with dark hair and a nice smile. He came in and calmly asked me some questions. He looked at my legs where the rash was and told me it was called petechia...he was the first person that had taken the time to look me over from head to toe, and the first doctor to notice the bruising. I remember being told that they were planning on giving me a blood product because my counts were so low, and if they had it would have killed me. The angel doctor just happened to be in the right place at the right time...he had done a little bit of study on a disease known as TTP while he was in med school.

It was a rare disease with only one known effective treatment, and the hospital wasn't equipped to do it. The older doctor had never heard of TTP...but after a quick briefing by the younger doctor and a look in a medical journal, he told my mom that they would be transferring me to a larger hospital nearby to begin treatment immediately. When my mom asked if I would be ok, he said “some people survive”. I wasn't around when he said that, but I can only imagine how my mother felt.

The next few days are a blur...I remember being loaded into the ambulance and crying that I wanted to go home. The nurse walking beside the stretcher cried with me. I remember the girl in the ambulance asking me about my son and if I had any special plans for him for Christmas. She was nice. I spent a few days in ICU...I remember a wonderful nurse who, oddly enough, was named Hope. She was very kind and reassuring. When the doctor came in to put in my line in my leg, she held my hand and shed tears with me when he struggled to get it in. I remember my father coming in and brushing the hair off my forehead.

I met “my angel” as I call her when I was in ICU. She was the Apheresis nurse who gave me my first treatment. It was the middle of the night when she walked in...the rest of the ICU was quiet and the lights were dimmed. I was wide awake...scared out of my mind because my mom wasn't allowed in the ICU but for minutes at a time. She walked in and the whole feeling of the room changed...it went from stark and cold to warm and somewhat comfortable. She explained to me that she was going to start my plasmapheresis treatment...and then she sang to me. I will never forget how her voice soothed me.

I spent a total of 10 days in the hospital. My mother rarely left my side. Without her, I don't know how I would have gotten through it. She was, and still is, my rock. While I was there, I met some amazing people who touched my life forever. While I hate the circumstances under which we met, I feel very blessed to know them and I attribute the fact that I am still here to their dedication to their patients and their never ending research. I continued to get treatment on an outpatient basis, and eventually had my line needed for plasmapheresis treatment removed.

The side effects from the Prednisone were almost unbearable...I had terrible hot flashes and night sweats, and the intense mood swings were hard to control. I gained 40 pounds from the steroids, and my face was enormous. My family and I love looking back at pictures from that time and laughing at how fat my face got. :) (Just a word of encouragement...the “moon face”, as my nurses called it, goes away eventually.)

It's been 7 years this September since I was diagnosed with TTP. I have since married the love of my life and given birth to two more beautiful children...a boy and a girl...and I have one more baby who is in heaven. I have been lucky enough to have avoided a relapse. In 2011 my doctors decided that since my levels were low during my last pregnancy that I would benefit from a Rituximab treatment. They were right...my levels are higher than they have ever been and I continue to stay in remission.

My life is much different since TTP...I constantly worry when I get a headache or a bruise, wondering if this awful disease is creeping back up on me, but I've been lucky so far. It has kept its ugly head down.

My energy level is low...I tire easily and I feel as though it takes me longer to recover from daily activities. I have a lot of joint pain...but no one seems to think it's related to the TTP. I also have extreme anxiety issues and mood swings, but I have been working with my PCP to get these issues under control. In the past 2 years I have been diagnosed with ADD, OCD, and post traumatic stress disorder which she believes stems from my parent's divorce and my TTP experience. All of these issues are silent and unrecognizable to everyone else but me, which makes dealing with TTP all the more difficult. With such little research on this disease, we just don't know what is “normal” for those of us in remission. My doctors tell me that my low energy and joint pain aren't related, but when I speak to others who have been through this journey as well, they all claim to have the same issues. It's my belief that TTP does more damage to our bodies than it is given credit for.

In spite of TTP and all of the issues that come along with it...I am ALIVE. I am here to raise my beautiful children, be a wife to my amazing husband, be a daughter to my saint of a mother and my dear father, be an aunt to my beautiful niece, be a sister to my incredible brothers, be a friend to my wonderful sister-in-laws...all of which are the most wonderful jobs I could have been blessed with. I am a survivor.

While TTP is a huge part of my life, I won't let it define me, and I am here to share my story in the hopes that it will encourage and inspire those on this journey. You CAN beat TTP...you can become a survivor and share your stories too...and hopefully one day our stories will help raise awareness and fund the research needed to help others afflicted. Good luck, best wishes, and high platelets to all of you fighters!!

xoxo, Rachael



Pam Smith, Patient

My name is Pam Smith; I am a 67 year old wife, mother of 5, grandmother of 14 and great-grandmother of 3. I live in Johnstons River, Prince Edward Island and this is my story of being a TTP survivor.

In October 2002 I was told that I had “Breast Cancer”. I was feeling fine and my husband and I had just started to travel. It came as a huge shock. It took awhile to come to terms with the idea that I might die. No one in my family had suffered from cancer. I had a mastectomy and was put on “Tomoxafin” but had so many side effects that I decided I would rather live for a year as myself rather than 5 years as the person the drug was turning me into. I am still Cancer free but have been visited by this strange blood disease that I have never heard of before. The doctors don’t know how a person contacts it or really how to get rid of it. There are just ways of treating it.

In March of 2007, when I was 63, my husband and I were in Charlottetown, Prince Edward Island shopping when I found that I didn’t know how to get out of the car. It seemed odd at the time but we went on and then I found I didn’t know how to close my cell phone. We decided to stop at the hospital and I would get checked out before returning home. Before we reached the hospital my speech became slurred and we thought I was having a stroke. I was unable to speak without my chin quivering and my words were slurred. Everyone thought I was having a stroke but when they took a blood test so they could administer a new drug for stroke victims they discovered my platelet count was very low. It was a struggle for them to get my blood and they took many samples over the next couple of days. Due to the mastectomy I do not allow blood to be taken from my right arm or IV’s or blood pressure to be taken. This meant that by the end of the two days my left arm was very sore and bruised. After two days one of the doctors decided I had a rare blood disease called TTP. Plasmapheresis is the standard treatment, but it cannot be done in Charlottetown so I was rushed to Halifax, Nova Scotia by ambulance. Platelet counts should be between 150,000 and 250,000 mine was at 17,000.

Our whole family was scared and everyone was on the internet gathering as much information on the disease as possible. When I arrived in Halifax the first procedure was to have a line put in my neck so that I could go on the apheresis machine. This is a machine which removes your blood from one tube in your neck spins it around removing the old plasma and replacing it with new. While in Halifax I was on the apheresis machine everyday for 10 days and then every second day and then every third day for about 5 weeks. I used about 150 bags of plasma. My veins were still giving everyone a lot of problems so I had lots of bruising on my left arm. I also suffered many types of reactions to the plasma treatments, so I was given a number of medications to help counteract the reactions. I used to tease the staff and tell them they just wanted to knock me out so I wouldn’t bother them while taking the treatments.  

Finally everything seemed to be back to normal. I returned to Prince Edward Island and had blood tests every week for about 6 weeks then once a month for a year. I thought I was cured and put it all behind me. I seriously felt I had a lot of people to thank for their plasma donations, and put a thank you in our Church bulletin. I thanked everyone I knew and helped out with a Blood Donor awards night at our local Blood Bank.

For four years I was fine, lived a normal and happy life. Then in June of 2011, my husband and I were busy landscaping the front of our home and building an extension on our back deck. One morning I thought I had blood in my urine so I decided to have my blood checked. I spent most of the day at emergency and they found that TTP had returned. This time my count was down to 7,000 so, it was back to Halifax by ambulance and back onto “apheresis treatments”. I received approximately the same number of treatments using another 150 + bags of plasma. I continued to have reactions to the plasma. This time I found I didn’t bounce back the same as the first time. I was more tired and less energy for things I was doing before. After a month I was well again and able to return home to PEI. The doctor in Halifax wanted me to have three vaccine shots in case I would need my spleen removed in the future. This is not a cure but helps in some cases of TTP.

When I returned home my blood was checked every week for a month and then every month. Everything went well until I had my first vaccine in late September 2011, and for a week I didn’t feel well. I thought it was the effects of the vaccine but eventually I went to have my blood checked and there it was again, TTP returned. This time my count was down to 4,000.  Back again to Halifax by ambulance and back to “apheresis treatments”. This time there were a lot of ups and downs and the doctor decided I would need to do something different. His choice was for me to take a new drug called “Rituximab”. My family and I read a lot about the drug and also about the splenectomy and didn’t like the idea of either.

In Halifax everyone who took care of me suggested that I take the drug. I had great care givers and decided I would trust them. When I finished treatments I returned to Charlottetown where my blood was monitored twice week, I also had the last two vaccines and in November 2011 I started the drug Rituximab. I was given this intravenously every Thursday for a month. It was administered in the Cancer Treatment Centre so I could be monitored while receiving it. Even with this drug I suffered a few mild reactions.

On March 8th, 2012, I was able to sit in on a telephone conference with the Answering TTP Foundation’s Toronto Support Group & Info Session.  The session featured a special guest speaker, Dr. Marie Scully, from London England. She spoke about Rituximab and how they use it after the first time a person is treated for TTP. I understand that they have had less returning cases than we have in North America.

As of today I am feeling fine. I get tired more easily than I used to, but of course that could be due to aging. The staff of the apheresis treatment centre in Halifax are all awesome. I have also had very supportive doctors in Halifax and in Charlottetown.

I have a very supportive family. A husband and 5 children, 14 grandchildren and three great-grandchildren who have been there for me every step of the way. My husband is mostly retired and was able to spend a lot of time with me while I was in Halifax. I also had a good friend who was able to stay at the Lodge with me when my husband couldn’t be in Halifax. Each time I was treated in Halifax I spent about 10 days in the hospital and then was permitted to stay at the Lodge if I had a companion, and then I received my treatments on an outpatient basis until I was finished. Many good friends who kept in constant contact and kept my spirits up through e-mail and phone calls while I was away from my home.

The only real restrictions I see on my life in the future is that I love to travel but since I never know when this disease will return I worry about leaving Canada. I know how expensive this treatment would be outside the country, and I worry if could even get access to it in time to save my life.

Most of the time I do not think about a recurrence but am certainly more aware of any little feelings I have because each time I had TTP it was different. I very rarely bruise and the petechia usually doesn’t show up until I am at the hospital.

Again I would like to thank all those people who donate plasma, the nursing staff of the apheresis centre in Halifax, my friends and most of all my family for all of their support.



Amy Granados, Patient

My name is Amy Granados and I am 35 years old and I live in Norman Oklahoma (Boomer Sooner!).  I am married and have a 16 year old daughter, 7 year old son and a 4 year old daughter.  I have been a Legal Secretary/Assistant for around 9 years at a large law firm in Oklahoma City. 

At the end of July in 2010 I woke up on a Saturday morning with sever stomach cramps at about 5:00am.  After a few trips to the restroom, a large presence of blood was very obvious.  That was very frightening to me along with the fact that the pain I was having was no ordinary up-set stomach, stomach virus type of a pain.  I got up and took myself to the hospital, which is very close to our house and was not really looked at all the way and sent away with some meds.  By that evening I was worse, dehydrated, bleeding a lot more (honestly it was like cups of blood and that was it every time I went to the restroom), and hurting so bad.  I went back to the hospital.  They were a little more proactive then, they did a few tests, gave me some pain meds, put me on an IV.  They Thought I had some type of Colitis because of where I was hurting and I would need to see a specialist for that the following week.  I stayed for several hours to get hydrated and get pain meds in my system then was released in the early morning hours.  The pain meds kept me asleep for a few hours at home but the next day, Sunday, I was feeling just as bad.  Enough that around 4:30 in the afternoon I went back to the hospital for my 3rd visit on Sunday August 1, 2010, walked in, saw the doctor that had helped me the evening before and he just looked at me and said I am going to get you admitted right now.

Everyone seemed to think I had some type of Colitis, but not sure which one.  One was treated with Antibiotics, one treated with Steroids and everything was so crazy they couldn’t do all of the testing due to my bleeding.  I was in the hospital for 5 days getting worse and worse with a GI doctor thinking he had was right that it was a type of Colitis but not about to treat me.  On my 5th day my attending physician noticed my blood tests had made a gradual and then drastic change.  He came to my room and said “there might be something different wrong with you than what the GI doctor was thinking and I am calling in a Hematologist right now to look at this.” My platelet count was 41,000/ul, this was at 8:00pm.  As they were looking at my blood tests I was moved to PCU and within less than an hour I was told that I was having some kidney function issues and it was because I had TTP.  A doctor came in my room and cut a port in my chest and by Friday August 6, 2010 around 9:30pm the Oklahoma Blood Institute was in my room and hooking me up to the Plasmapheresis machine.  I didn’t understand everything that was going on at the time, it was such a whirlwind of information and urgent treatment that I just knew it was very serious.  The doctor had spoke to my husband and said if I didn’t get this treatment now, I would have complete kidney failure within a few hours.

The next morning I had a visit from Dr. George James that does research on TTP at the University of Oklahoma (Boomer Sooner) and during that visit he gave me and my family members several articles and reading materials to help all of us understand TTP which none of us had ever heard of before.  It was hard for me to take a lot of it in, a lot of my time in the hospital is blurry anyway because I guess all of the medications and stress and effects of the TTP.

During my first treatment had extreme anxiety, It was a crazy looking machine, made me feel very funny and I was becoming confused anyway because of the TTP.  I received 14 units that first night and a couple units of blood.  Over the next 6 days I received another 83 units of plasma and 6 units of blood and after my treatment on that 6th day after having a sever headache the entire day before and that day, my platelet count dropped as low as 14,000 and hemoglobin to 7.6.  By the 7th day of treatment I had to sever gran-mal seizures.  I was rushed down to get a CT scan and once I finally came too, I had another one in the holding area for the CT Scan.  Then next thing I remember was a few days later and I woke up in ICU with machines everywhere, and 2 broken shoulders.  I needed surgery on one of them but of course with the TTP I was unable to do so due to bleeding out.  I had to just slowly heal. 

My doctors were unable to control my blood pressure and pain so I stayed in ICU for a few weeks while still receiving my plasmapheresis treatments.  After 10 treatments, 140 units of plasma, 8 units of blood I finally started to show signs of improvement.  I had my up and down days after that, but it was good enough to finally stop treatments and be monitored.  I stayed on 3 different blood pressure medications and after they were able to control that with oral medications I got to move out of ICU back to PCU and after about 4 days in PCU I was finally about to go home.  I had been in the hospital for 24 days. 

I missed my kids first day of school, first weeks of school, I didn’t get to see my young children while I was in ICU for a few weeks, I feel that they were really affected by it,  especially my son.  He was 6 at the time, entering 1st grade and had lots of homework and no mom to help him with it, my husband was doing everything on his own for the kids and stressing about my health, after I had gotten home I had 2 broken shoulders, I hadn’t walked in a month and just not my normal self for months so I feel really guilty that he got put back into Kindergarten after the first 9 weeks were over.  He just had too much on his mind, he never acted up, he was just not ready for that with all of the stress at home I think.

Dr. George visited with me several times while I was in the hospital and his TTP study group has a meeting every 4 months.  It is amazing how many side effects are caused by TTP.  I have short term memory issues, fatigue issues, I had major hair loss several months after treatment, sleep issues etc….at these meetings I realized I am not the only one.

I will say that I have not had a relapse and hope not too.  The type that they think I had was possible caused by e-coli but it was never really found in my system.  However, with all of the things that happened with my TTP, it was a blessing in disguise.  Even though I almost didn’t make it through the TTP, I did and once I was doing follow-up on my shoulders they found that I had a huge gallstone that needed to be removed and was causing some pain.  Once they did the pre-op for that surgery and my blood counts were good enough to have surgery around Thanksgiving 2010 they found that I had a tumor on my pancreas.  After being sent from specialist to specialist, they found that it was not full on cancer at this point, but all of the cancer markers that they tested for came back indicating it had an 80-90% chance that it would turn into cancer.  So at the very end of February 2011 I had a Whipple surgery to remove a portion of my pancreas, my gallbladder, my duodenum etc.  I am back at work finally, I have good days and I have bad days but in general my energy, health are not the same as before I got sick a year ago.  Things are work are more challenging for me than they use to be, multi-tasking and stress seem to overwhelm me a more but I am hoping that over time they will get better or I will learn to handle it better.

I do know that I am on the road to recovery; I get better week to week.  Although some things might be challenging now, even if they stay the same I will learn to accommodate better for those issues as the years go on so that is encouraging to me.

I am one of the lucky ones, although my experience with TTP was very serious, reading how others have to go over it again and again with relapses, I have a lot of gratefulness that I might not be one of those and my hat goes off to those who stay strong and deal with TTP over and over. 

“That which does not kill us, makes us stronger!”




Nicole Bova, Patient

My Name is Nicole. I am 30 years old and I live in Massachusetts. I have been married to my amazing husband John for 13 years, and we have 2 sons, ages 15 and 11. I work at Lahey Clinic Hospital as a Medical Assistant, I have worked there for 8 years. I am a TTP survivor.  

I was first diagnosed with TTP when I was 24, in January 2006. I was having some bruising on my body, had blood in my urine and felt run down. Luckily I work at an amazing hospital and had blood work done and saw a doctor quickly. The doctor sent me home after the blood work and told me she would call me with lab results.  Shortly thereafter, the doctor called me at home and said to go directly to the ER. I was never so scared in my life.   

 

While I was laying in a bed in the ER with my husband and parents by my side, a doctor came in and told me that I had a rare blood disorder called TTP and my platelets were 11,000. That night they inserted the line in my neck and started treatment, I recovered with plasma pheresis after about 3 weeks. I thought that I was better and it was a one time thing that I would never get back. Later that same year, in July I was having the same symptoms so I went to see my hematologist, I was admitted again and started plasmapheresis. I wasn't responding like I did the first time so my doctor started me on Rituxin, my miracle drug! After receiving Rituxin and pheresis I finally went into remission and this time I went into remission for 3 years. I relapsed again in January of 2009, treated with plasmapheresis and Rituxin and responded immediately. I want to mention that I have an amazing Hematologist, Dr. Neil Weiner, Lahey Clinic who takes wonderful care of me! As I sit here and write this, I was just discharged from the hospital 3 days ago....On May 25,2012 I went for my 6 month follow-up with Dr. Weiner and after I got my labs done he always comes in and as soon as he opens the door tells me my numbers...this time he opened the door and said "how are you feeling?" I knew when he said that, that something was wrong...I had NO symptoms this time, no bruises, blood in my urine, fever, or fatigue. He continued to tell me that all my labs were normal except my blood smear and my platelets were 106,000...my usual count is between 240,000-270,000. The good news was that we caught it this time REALLY early so I was admitted for TTP for the Fourth time!!! This admission was for only 5 days because of how early it was, I received plasma pheresis that same day and everyday since then. I am 7 days out after being admitted, so far had 7 plasma exchanges and 1 Rituxin infusion and today my platelets are 232,000!!!! Tomorrow I will go for my second round of Rituxin and another pheresis and I will be weaned off the pheresis hopefully with in the next few days. TTP has given me horrible anxiety that I've been dealing with since the first time I was diagnosed. I consider myself extremely lucky to work at such a great hospital and to have such a compassionate and smart team of doctors that take wonderful care of me. Lastly, I just want to say that the Rituxin really helps put you in remission quicker and for a longer period of time.....I am always hoping that this is my last struggle with this HORRIBLE disease and I can live the rest of my life without getting it back, but I know its always a possibility and its just so hard to accept but I know I can beat it every time, I've beaten it 4 times already!!!  

 

I'm happy I found Answering TTP Foundation and appreciate raising awareness because more people need to know about this.

 

Thank You for reading my story,
High Platelets!!! 

Nicole Bova  



Catherine Cook, Patient

My name is Cathy Cook; I am a 51 year old wife and mother to a daughter that I love dearly and without her I would not be here today saying that I am a TTP survivor.

Life was going well for me and my family when one day in May of 2007 it seemed to have come to an abrupt halt. I had begun to feel tired, my appetite had changed, I wasn’t sleeping well, had migraines, bruises, a rash all over my body and I was beginning to turn jaundice. With this happening to me I soon realized that there had to be something seriously wrong with me. I drove myself to the emergency room where I was seen by a doctor who had ran blood and urine tests. The results came back stating that my platelet count was very low and that there was blood in my urine. The doctors were trying to figure out what exactly was wrong with me. Leaving the hospital that day with a prescription of Prednisone to take over the next few days and instructions to go back in for several blood transfusions. While driving home that evening I had this feeling of uncertainty as to what was wrong with me but knew it was not going to be good. When my family and I arrived at the hospital a few days later they had done more blood tests and found that my platelet count had not improved much and my urine was still showing signs of blood in it. They began the blood transfusions that day but had difficulty finding a vein to begin the transfusion. I ended up spending the night in triage until the transfusion was complete. Leaving to go home in the wee hours of the morning, they asked me to come back the following day for another transfusion. I didn’t quite make it to that next appointment. While I was getting ready that morning to go for the next transfusion, I had lost consciousness and my daughter had to call 911. According to my daughter I had passed out, turned blue around the mouth, and kept coming in and out of consciousness until the paramedics arrived. I was rushed to emergency by ambulance and the doctors had ran more blood tests, urine tests, and scans getting the same results as earlier that week. The doctors knew it was serious but still did not know what was causing this; at this point my family and I were beyond worried.

After multiple tests, a hematologist at the hospital found the culprit- I had TTP. The doctor told my husband that I had TTP, and would need to be air lifted to a larger hospital a few hours away with a plasma exchange machine and that without this it was a life or death situation. Shortly after I was loaded into an ambulance, brought to the airport and air lifted. At this hospital I was sent to ICU immediately for 2 days until I was stable enough to be on a ward.

I had a total of 13 plasma exchange treatments, as well as steroid treatment afterward. I had begun the road to remission. I was feeling better, but not my same old self. TTP had worn me out, as the months and years wore on I never forgot about the disease. It was always in the back of my mind, not if it would come back but when. In the pit of my stomach I knew my battle was not won and boy was I right. It came back again July of 2011. Again I had broken out in bruises, rash, headaches, and was exhausted. I went to the hospital to get them to run some blood work to see if I was correct in what my body was telling me. I sat at one hospital in my town for 5 hours and no one took me seriously. At that point I went home. Later my daughter had called me and I told her what was going on. She told me to get ready and she was coming to get me and take me to the other hospital in our city and she wasn’t taking no for an answer. Off we went and we were seen right away. The nurse who took all of our information knew this was serious, she had heard of the disease before-thank goodness. They ran blood tests, and yet again found a low platelet count. I was brought by ambulance to the next city a few hours away again for my second round of plasma exchange. I had 10 treatments this last round along with the steroid treatments.

I am now again in remission. Even more tired and exhausted than the time before. TTP has changed me. I cannot do all of the things I use to do, I get tired easily. It has changed my family, they are very aware of the outcome of this disease; it scares both them and myself. For something we didn’t even hear about 5 years ago, we are very aware now of how precious life is, and each day is truly a gift. I now sit and wait, as doctors tell me it may be a matter of time before I fight the great battle of TTP once again; If and when that time will come I may lose my spleen. The chances are very likely I will have it again, the question is just “when”? If it was not for the amazing nurses and doctors at both the Moncton hospitals and Saint John Regional who gave their unconditional support, love and care I would not be here today living every day to the fullest. They are in my thoughts every day.

I hope my story can help someone else like me, or bring more awareness of how much more common this “uncommon” disease is.

I have TTP and I am 3 in 1 MILLION!

Jessyca Basque, Patient

My name is Jessyca Basque I’m 35 years old and I live in Oromocto, New Brunswick. I’m married to Steven and have two children Elizabeth who is 10 and Nikolas who is 7. I’ve been diagnosed with TTP in 2006 when I was 30 years old and my children at the time were 1 and a half and 4 years old. I currently stay at home and take care of my kids. The first time I was diagnosed I went to the emergency room with stomach pains. At the local hospital the doctor took blood samples and my platelets were down to 6000 per ul. I was then sent to a bigger hospital only to be transferred to Quebec City. I spent the next 4 months at the hospital before I could continue the treatments at the outpatient clinic. I had never heard of TTP before and didn’t understand how and why I was diagnosed with this. The first few months were very hard physically and mentally my children were 7 hours away at their grand parents and Nikolas was only a baby.

After finishing my treatments my life somewhat went back to normal for almost 2 years and then I had a relapse. Again I spent three months in the hospital in Quebec City. I then was able to transfer to Saint John under the care of Dr. Sean Dolan to finish my outpatient treatments. TTP has changed my life and my family life, after my first relapse me and my husband decided to move closer to Saint John. We decided that as a family the kids had suffered enough being away when I was sick that this was the best choice for us.

In the bottom of my heart I wished that I never would have to visit the ER for this but in February I had another relapse. This made our move decision the smartest family decision we ever made. I was admitted with my platelets again at 6000 per ul. I stayed roughly 2 weeks in the hospital before being allowed to do the treatments at the outpatient. I did roughly 2 months of treatment before I had a splenectomy. I have been without a spleen or a plasma treatment for about a month now and my platelets are keeping steady. I thank Dr. Dolan and Dr. Comeau for all the help they have given me. I also thank Arlene for being there when I needed her as well as Stephanie and the other nurses that help me through this.

TTP has changed my life forever; it has made me stronger because each day can be a struggle. It has changed my family and also a lot of things that I took for granted. I take my afternoon naps just to keep up and go to bed early because I’m constantly tired but I have learned to live with this. I forget more things but my family understands that this is part of me now. I have learned my limits and understand that I shouldn’t exceed these limits or else I pay for it the next few days. I don’t know what the future holds for my family and me but I hope I am done with TTP. Being diagnosed with TTP has changed some of my plans for the future; the biggest thing is I don’t know what the future holds. I hope that this relapse was my last; I want to enjoy the rest of my life without having to fear I will relapse again. I thank my family for all the help they have given me.

Jacqueline Theriault, Patient

Coming soon!



Teela Beals, Patient

My name is Teela Beals I am 33 years old, living in Dartmouth, Nova Scotia. I am single and living in my own apartment. I am an esthetician working in the beauty industry. When I first had TTP it was back in October 2007. I felt really tired, like I couldn’t get out of my own way. At the time of my first episode I was living with my mother, she is a nurse. I can remember saying to my mother walking up three flights of steps "man I’m tired mom these steps are killing me", not knowing I had TTP. A few weeks after that I noticed bruising and little red dots on my arms and at that point I knew something was wrong. So I went to the doctor he gave me a form to get blood work done. I waited until Monday, my day off from work, to go to the clinic.

Blood work was done at 7:30am. After that I went to my aunt’s house to meet her to go shopping around 9:30. Not even an hour later my doctor calls my cell phone and says "Teela you have to go over to the emergency right now at the Q E 2 hospital something is wrong and I don’t know what it is. I called them to let them know you are on your way." At that very moment I knew my blood pressure was up. I was scared. I did not know what was happening to me.

I was in emergency for at least 7 hours, my mom running back and forth because that was the hospital she worked in. The doctor looked at me and said "Teela we have to admit you". I broke down in tears. That night I will never forget the nurses taking great care of me. I was on Prednisone.

I really don’t know what happened or how it happened or why? I still ask myself. I do believe that everyone has an underlying sickness and stress will bring anything out, and at the point in my life I was stressed. I never heard of TTP before and wondered why me out of everyone I had it, but I knew that God does not give anyone anything they can’t handle and it was up to me to beat it. My mom was my rock she helped me more than anyone; she was there for me mentally and emotionally. I do know after they told my grandmother she ended up in the hospital and I know it was because she was worried about me. From the end of October to January that year I was off work. Went back a week around Christmas time and I was so tired. I never realized when you’re in the hospital your life stops and everyone else around you keeps moving along with their life. Most of my friends I feel don’t understand what I went through, but I’m ok with that because I know what I went though and that’s all that matters.

When I had to get Apheresis it drained me, I remember one time I had a reaction to the plasma and my throat was itch and scratchy and I had hives and they had to hook me up to a heart monitor because I was having chest pains. I'm thinking in my head "only I would be allergic to plasma". I really laughed at myself because the only way I could get though this was smiling. I felt like Will Smith off the movie Hitched when he ate the shell fish and had a reaction. (Laughing) The Apheresis team was great to me and made me smile every day I was in there. Dr. Robinson was awesome; she made me feel like I could ask any thing. I felt like I was VIP in there. I also met a girl my age in there. Me and her still to this day keep in touch, she had TTP too. It’s kind of funny my mom baked them a cake because they treated me so well just to show some appreciation.

I did have another relapse in December 2009 I took myself right into the hospital on Christmas day and was in there for about 3 weeks until I became an outpatient I wasn’t on Prednisone this time which was great! I took January off from work and went back in February.

I find myself waking up looking at my arms every morning looking for bruises I carry a blood form around in my purse just in case. If I feel anything weird I’m getting blood work done. Maybe a bit paranoid but I think it’s cautious.

I want to have kids someday but I hear stories online about people getting TTP back when they get pregnant, I know how hard it was for me to go through and I don’t know if I would want to go through it with an unborn child, but I still believe if God wants to bless me with one then he will.

I tell everybody to give blood. Whether or not they listen to me, is there choice. You will never know when you will need it. I never in a million years would expect to get TTP and never expect to receive a great gift from someone I don’t even know, I realized how much it meant to me when I was in the hospital that someone giving me there blood was the best gift I ever received in my life. Because of these people I never even met I'm still here kicking around. I have a great deal of respect for blood donors, they gave me my life and I thank them.

Now I try to eat my leafy green vegetables, I am on iron pills but they seem to not be working me and Dr. Robinson decided to start me on IV iron in a few weeks to see if we can keep my iron up, my day to day I just live to the fullest because I never know when God may want me. It has been a great life and I do believe I am here to tell my story an educate people on my story with TTP.

Mark Rose, Patient & Volunteer Answering TTP Foundation

My name is Mark Rose. I'm 36 years old and I live in Halifax, Nova Scotia with my girlfriend Sarah. I was diagnosed with TTP in May 2011. It all started for me with weird feelings of dizziness and nausea which I kept writing off as 24 hr bugs. Then at one point it got really bad and my urine actually started turning brown. Within a few days of that starting I went to see my family doctor and she immediately sent me to the ER after seeing a urine sample. I was seen by excellent ER doctor in the QE2 ER who took some bloodwork and discovered that my platelet count was at just 11,000. I was immediately freaking out because I knew what platelets are and what they do but I knew absolutely nothing about platelet disorders. The ER doc calmed me down and theorized that I had ITP but told me he had consulted with a Hematologist who was shuttling over to see me in the ER. After seeing the Hematologist they gave me platelets and started me on 100mg of Prednisone and had me come in every day that weekend for bloodwork. There was no improvement in my platelet counts that weekend so that Sunday May 22 I was admitted to the hospital for the first time in my life. I was scared out of my mind and the Prednisone certainly wasn't helping with that at that point. The Hematologist confirmed my diagnosis at that point that I didn't have ITP but actually Idiopathic TTP.

I then began receiving plasmapheresis treatments daily. I'm a pretty big guy so each time they would use anywhere from 12-16 units of plasma. In total from May until August I had 59 plasma exchanges. So I literally have HUNDREDS of donors to thank for saving my life. The plasma exchanges would increase my platelet levels but they weren't curing the TTP. I eventually received 4 doses of Rituxan in August and that put the TTP in remission.

Throughout my whole experience I learned a TON about TTP thanks to resources like www.AnsweringTTP.org and also the TTP support group on Facebook. My Hematologist and the nurses in the Apheresis Unit at the QE2 hospital were also very informative and honest with me and answered every single question I had. I can honestly say I feel extremely lucky to have been diagnosed and treated for TTP so quickly. And I can't say enough how much I appreciate the care that I received. Especially from the nurses in the Apheresis Unit. They truly got me through the scariest summer of my life and were always so kind, helpful and friendly to me even on my bad and really crazy days.

As far as the future goes I know there will always be a possibility of me relapsing but I'm ready to beat TTP again ANYTIME.


Ian Wilson, Patient & Volunteer Answering TTP Foundation

I think it is wonderful to have the regular support group sessions. I look forward each time to hearing about new developments in the fight against TTP and listening to patients brave enough to stand up in front of the group and share their stories. Although I would not wish TTP on anyone it has been comforting to know that others have faced and overcome the same challenges I have.


I was first diagnosed with TTP in August of 2005. I spent a few weeks in the hospital undergoing plasmapheresis and a month or two as an outpatient before slipping back into normal life. Despite being asked "How are you feeling?" at least twice a day for months afterwards, I stayed pretty positive and considered the ordeal over for good.


Over the next five years I relapsed three times and ending each successive relapse required a new level of treatment: prednisone, rituximab, and finally the removal of my spleen. While I had a measure of respect for how serious TTP can be, the fact that you can still die from it had not quite sunk in until my third relapse. After being shifted from inpatient to outpatient, I was traveling to either Princess Margaret Hospital or Toronto General Hospital almost every morning for plasmapheresis only to watch my platelet count drop back down by the next visit.


My morale took a huge hit during that period; even though I was walking around and acting quite normal I was not getting better. I remember my mother and I telling each other that everything was going to be ok, but I don't think either of us actually believed it. I knew that without the treatments I would eventually die and I wondered if there was a point where the hospital would decide that I had wasted enough blood products and just let me go. I was very fortunate that the splenectomy put me back on the road to recovery.


The first Toronto Support Group & Info Session was held not long after my surgery. I almost didn't attend as my midsection was still sore and the central line required for plasma exchange was still embedded in my chest, but I was glad that I went. Meeting other patients face to face, listening to survival stories, and seeing everybody smiling gave me hope when I really needed it. I have attended every meeting since then.



Ron Hanis, Husband, Supporter & 2011 Walk to Answer TTP Participant

Life was normal, life was good, life was moving along, Beatrix Angela and I had enjoyed a pretty good year up to late October. We attended many family functions throughout the year, these were always good times, family was so important to her. We were going to just hang around home and do a little home renovation that summer, but at the last minute she suggested, let's go to Calgary for a few days and then go to Vancouver for a week. A few days later all arrangements were made. July was beautiful weather wise, at least it followed us everywhere we went. Calgary was a very good time, The Zoo, Heritage Park, cruising around in our Mustang rental, and time with family there was very special. We had such a good time, we planned to go back this year and take in all that we missed. Vancouver is always good times, family and fun, we got to play our first round of golf on a beautiful mountain course.  Many firsts that ended up being lasts. Everything seemed normal to our eyes, except for the fact Beatrix was complaining that she was getting lots of wrinkles on her face, everything was normal. I would just tell her, well you are getting older dear, it’s natural. Back in Winnipeg and back to work, Trix was a real spark plug; she worked hard and was very fast paced in her approach to her job. So for her to come home exhausted was not out of the norm, but I started hearing her say "I am so Tired" alot more often. August & September went by like normal, lots of birthdays and a few more family gatherings. October brought the usual fall activities, getting ready for the cold weather and putting all the yard things away. October 9 2010 was Thanksgiving, so we had our last holiday gathering together, I was so fortunate to be taking some video on the video cam, it would be the last video her, one month to the day she passed. Not long after this Trix started to notice very small little bruises on her one leg, she mentioned it to me and she just figured that she had been bumping into things at work. I bought into that reasoning, but they didn't seem to be going away. My biggest regret is that we didn't go to the hospital sooner. She started getting bruising on her arms and they got big fast, I started getting scared as was Trixie, She phoned me at work and said she wasn't feeling well and that she was feeling dizzy. After I came home from work, I said we are going to the Hospital in the morning. That night she was very still and cold, I was having major anxiety wondering, what was happening to my sweetheart. I look back still shaking my head about it all, if we had reacted a bit sooner maybe the outcome would have been different. We got up early and got ourselves ready, Beatrix was very sluggish, and very emotional, she was scared. I turned the handle on the door and opened it for her, little did I know that it would be the last time she would ever walk through that door.

We made our way to the Grace Hospital Emergency in Winnipeg. It didn't take too long for the triage nurse to have her admitted. They gave us a room, and a nurse was in fairly quickly to do tests and blood work. I remember that the room was cold and Beatrix was shivering under the blankets she had. I took off my leather jacket and covered her with it, which helped a bit. The nurse came back and took more blood from her, 5 times if memory serves me. The last time the nurse took blood from her I broke down crying. To see your sweetheart laying there cold and scared was at the time more than I was able to handle. A few hours into our stay a doctor had come in and explained the situation to us. I didn't have a clue what he was saying other than, Beatrix had some type of blood issue and it was best served if she was transferred to HSC Hospital in Winnipeg. They offered to transfer her, or we could just go ourselves, which is what we did. We were both starving, so we quickly stopped and fast food restaurant, got some food via the drive through and sat in the parking lot and eat and talked. This would end up being the last meal we ever eat together. We made our way to HSC and parked the car, finding the emergency section, we submitted the paperwork that was given us and we proceeded to wait. Time passed and we were eventually called and placed in a small room where a couple of  Doctors who were specialists in  blood disorders came in and laid it all out on the table for us. They were very blunt and to the point. The older doctor said you have "Thrombotic Thrombocytopenic Purpura" or TTP, we just looked at each other and then back at him and said, "What", What is that, never heard of that! He went on to explain TTP in terms that were for the most part way over my understanding. The words "it can be fatal" were all we needed to hear. When do we start the treatments and where do we sign was our collective mindset. We got all the particulars out of the way and were give a room to setup in. Plasmapheresis treatments were to begin in the morning, so it was about midnight when a surgeon came into the room and explained what his role was to be and the steps he needed to take in preparing her for the treatments. He had to perform an operation of inserting the catheter in her neck. I recall her writhing in pain as he was performing this, my heart was shattering. This was all brand new emotional territory for us, I was trying to stay and look strong for her, and I think she was trying her best to look strong for me. It still haunts me to this day, when I try to imagine what she must have been feeling inside. It had been such a long day and I still don't recall if either of us got any sleep that night. Morning arrived and the day staff made themselves known to us. Breakfast was served to Beatrix and then she had to drink a large amount of some fluid that was said to be necessary to do a proper scan. I still wonder about that, because when we got down to the room where she was to have the body scan, she was cold and shivering, even with lots of hot blankets on her. She threw up everything she had consumed and drank, but they did the scan anyway. It's hard to know what's necessary or not when you just don't fully understand what is going on.

All I can say for sure is that my sweetheart was scanned and tested for a whole host of things over the course of the next few days. This whole situation was taking a toll on her, the Plasmapheresis treatments were as I perceived, really kicking her. The results of the treatments were never as good as the nurses were hoping for, but they were always optimistic and left me feeling the same. That poor girl was so tired, all she wanted to do was sleep. After only 2 days of single treatments they decided to go to 2 treatments a day. She was so tired, it was all she could do at this point to just whisper a few words. This was the day our sister in-law and niece came to visit, bringing her new born with her. This was the last time I ever saw her smile, it still tears me up inside. The treatments continued with much the same result, her levels would come up but they would not hold, at least up to this point in time. They had spoke of another lady who was down the hall who had received 6 treatments and was stabilized and released. I presumed it was true, no way to verify, but I knew already that 6 treatments were not going to work in our situation. Beatrix would receive 13 treatments in total. It was a Friday and in the process of getting her first treatment of day 4 in the hospital, she had what I will call a massive seizure. The nurse was doing the Plasmapheresis treatment and I was on the other side of her bed talking to her and looking in her eyes. She started to raise her one arm up and turn her wrist like she was looking for her watch to see what time it was. She did this 4 times, and I said to her, "don't worry dear about the time, I phoned work and told them you weren't coming in today." She was always concerned about work an never being late. It was at that moment that she started to convulse violently. The nurse yelled out some kind of code word and people were coming out of the wood work to help. Someone grabbed me and took me out of the room, I was in a state of shock. To see that happen to the one you love takes you to places emotionally you have never been. They eventually got her stabilized and she was then transferred to the MICU ward. In short, she spent the next 5 days in MICU getting her treatments and the best care humanly possible. The results were much the same as before, always up and the down. I was getting pretty good at studying the nurses faces, looking for the expressions I was fearing. In conversation with the doctor, he had told me that she had at some point suffered from a stroke. The scans showed evidence of it, and he did show me what I will call, x-ray scans. 2 black area's on the lower back of the brain. At least this is what I recall, because of the state you are in, some details are fuzzy.

Nov 09 2010, early evening I was down in the hospital food court having a bite to eat. I went back up to MICU and they let me in, as I walked towards the section she was in I could see that she was breathing extremely fast and that there was a few extra nurses at her bedside. The nurse in charge of Beatrix's care took me aside and said she had just had another seizure and I was to leave until they could get her stabilized again. I waited in the lounge area with some family for about an hour, so we went for a quick coffee. On the way back up to the lounge area I heard my name being paged to the family room in MICU. I knew what that meant, my mind was gone at this point, I was in shock. I came in and was immediately escorted into the family room where a doctor sat me down and explained the Beatrix had suffered a massive heart attack and had flat lined for  2 and a half minutes. He went on to explain that they had brought her back, but things were extremely serious and the potential of death was very high. No sooner did the words come out of his mouth, when Beatrix went into cardiac arrest a second time. They brought me to the edge of her room after I requested it. What I witnessed will forever be branded in my mind. So many people using every ounce of their skills to try and save my beloved Beatrix. I heard a doctor cry out "Time Please" and I felt my soul hit the floor. I knew what that meant. Everyone but her nurse cleared the room and I was left to say goodbye to the Love of my life, My Soul mate, My Everything. I held her hand and rubbed my fingers through her hair and whispered in her ear, "it's ok to go dear, don't hold on".  I also told her that "I will love you till the end of time" My tears were falling on her face, I closed her eyes for her. I spent time alone with her talking and praying over her and some time with family and the house Chaplin. In absolute shock, there is no other word. After a while I covered her face and blew her a kiss and then turned and with all my strength walked out of that room. I signed off on some paperwork, I still don't know what I signed, doesn't matter I guess. The whole family gathered in the lounge and comforted each other as best as we could. We left the hospital. Over the course of the next week all funeral proceedings were handled, and family and friends went home and I was left alone in our home to begin a journey I had made no preparation for. It's been a year of stress and anxiety, multiple counseling sessions, so much confusion and pain. I am not and nor will I ever be the same person I once was, life is a challenge, life is precious, life is a mystery. I was trying my best to live as normally as possible, to continue my routines, but constantly feeling like glass half full. The better half of me was gone, the half that filled me with love and compassion, with so much joy. A future full of pain from loss, cold memories, death is waste I would say. Time heals all they say, well it smoothens out the sharp edges anyway, I'll buy into that much.

I was on the internet doing some reading on "Thrombotic Thrombocytopenic Purpura". I was trying to get a little bit better understanding of this Monster that took my sweetheart. I still haven't read that much about it, the sting is still very present today. It will take some time before I can really feel comfortable with all that happened to sit down and get to know this disorder and what it has done to me and to all who loved Beatrix. In my search I came across the AnsweringTTP.org website. The graphics on the page grabbed my attention for some reason. I was reading about the up and coming walk and thought, Hey that's cool. This was something I could do to honor the memory of my sweetheart. I put the page in my favorites and left it at that. Life went on as normally as it could and I never thought much about the walk or the webpage I had saved. I just want to forget about TTP and what it had done to us. There was this little tiny undetectable spark in my heart I guess, because as the date for the walk was getting closer, that spark was getting hotter. I made a promise to my sweetheart that I would do the walk and try to make a tiny bit of difference so hopefully someday, someone would not go through what she went through. I registered for the walk and through word of mouth and social networking I manage to get a few people who could commit to walk with me this year, and some others who said they will next year. In the short time frame we had, we managed to raise a bit of money, but more importantly we managed to inform a lot of people of a disorder that almost all people had never heard of. Slowly and with the efforts of many, we as a community of people who have been struck by this disorder called TTP will have an impact.

TTP, This is what you did to Me!  




Mina Rajan, Patient & Volunteer Answering TTP


I am 48 years old and Thrombotic Thrombocytopenic Purpura (TTP) has been in and out of my life for the past 17 years.  I have always been very healthy, as I workout 3 to 4 times a week, eat well and do not smoke or drink. I have been an advocate of leading a healthy lifestyle, which has helped me deal with my TTP episodes.  I was first diagnosed with TTP in January of 1994 at the age of 32.   My children were 4 and 6 years old. This disorder affected me physically and mentally.  As for the family, they suffered just as much.   It started with petechiae (small red dots) on my arms.   The family physician had me go for blood tests and the results showed that my platelet count had dropped to 16,000. Normal levels should be above 150,000.  My family doctor said it was due to my cold virus and I should recover soon.  My husband wanted me to get a second opinion with his family physician.  A call was made immediately to the emergency department for my admission.  The hematologist on call diagnosed me right away by looking at my blood smear.  He started treatment including 50 mg of Prednisone and Plasmapheresis the very next day.  At that time, Plasmapheresis was done in ICU (Intensive Care Unit).  The whole experience was very traumatic, as it included inserting the catheter in my neck and having to be hooked up to all the monitors.  I was discharged after 2 weeks and the recovery took a very long time.

A month later in February of 1994, I was diagnosed with ITP (Idiopathic Thrombocytopenic Purpura). Although not as fatal as TTP, I was given Prednisone at a low dose to keep the platelets up.  No hospital admission was required.

In July of 1994 that year, my TTP relapsed. For these few months, I was going for regular blood work and that is why they were able to detect the relapse. The same hematologist placed me on 200 mg of Prednisone and Plasmapheresis.  The side effects of Prednisone were terrible.  One of the side effects was vision issues, and at times my husband had to use a wheelchair to get me around.  I was discharged after 3 weeks.  I had gained 40 lbs from the Prednisone, which took me a year to lose.

Later that same year in September of 1994, ITP re-surfaced and they decided to remove my spleen.  Fortunately, this placed me in remission for 16 years. 

Then in February of 2010, I relapsed again with TTP.  When I recognized bruising on my hands, I reported to emergency right away for admission. The medical team started me on 50 mg of Prednisone and Plasmapheresis immediately.  I was discharged after 11 days.  The Prednisone caused CSR (Central Serous Retinopathy) in my right eye.  I could not see very well.  This was difficult because I enjoy reading, and my work involves extensive use of the computer.  The Retina Specialist performed a laser surgery in September of 2010.  By December of 2010, I was finally doing well and was able to resume my normal work hours and routine lifestyle.  Throughout the year-long recovery from this more recent TTP crisis, I was thankful once again for the support of my husband, family, friends, work colleagues and the medical staff. Moreover, since my earlier battles with TTP, my kids have grown from toddlers to young adults. Now it is not only their smiling faces that help me fight on, but their shoulders of support. 

My remission was cut much too short. Only a year later, in January of 2011, I relapsed again with TTP.  I caught a flu bug and the petechiae appeared on my thigh.  Once again, I was admitted immediately and they started the Plasmapheresis treatment.   I was not given Prednisone because of my historical vision issues with this drug. This time, the medical team wanted to be more aggressive in the treatment.  I was given 3 cycles of Cyclophosphamide but my platelets would not stay up without Plasmapheresis.  Next, was 4 cycles of Rituximab but again my platelets would drop without Plasmapheresis. These drugs are used to suppress the immune system.  The doctors did more research and decided to do a nuclear ultrasound and discovered that my spleen had either re-grown or not been removed completely.  As a result, a laparoscopic surgery was performed to remove the 2.5cm Spleen.  After surgery, the platelets dropped again and they started the Plasmapheresis treatment.  The Calgary physicians had never experienced this with a TTP patient.  This meant going into an unknown territory, which worried me.   I had tried to remain positive all along until this time, but now I was scared. My doctor passed on contact details for Answering TTP Foundation and I was happy to connect with other TTP patients for the first time to share experiences and knowledge. Shortly thereafter, a call was made to a couple of US Doctors that have been doing extensive research on TTP. They recommended the drug, Cyclosporine.   After a few weeks, my platelets finally stayed up without Plasmapheresis.  The plan was to keep me on a high dose of Cyclosporine for 6 months and then taper me off.  Cyclosporine has some really nasty side effects.  The doctors were not sure what treatments had finally worked on me.  They said it could be all of the above.

Three months later in May of 2011, I was finally discharged. It was physically and emotionally very draining. The hospital staff, family and friends have helped me pull through this.  My manager, supervisor and colleagues at work have also been very supportive.  I cannot thank everyone enough. 

I found out this year about Answering TTP Community.   It is a great network and I am happy to be part of it.    I realized how important it is to support each other and bring awareness of this disease.  I am excited to walk on September 24, 2011 in my community as part of the first national movement for TTP. Hope you will join us!



Charles William (Bill) Dean, Patient & Volunteer Answering TTP Foundation


This all started last year. I am 79 years old and I was enjoying a Panama Canal 29 day cruise with my wife.

I was told when I visited the ship’s doctor on October 18, 2010, that I had a viral infection like over half the passengers on the ship. I was given some lozenges and told to return if they did not do any good. I returned two days later for an appointment and was told that the doctor was too busy to see me that day. We were getting off the ship on October 24, 2010, so I decided to wait to see my regular doctor when I arrived home.

I remember little about the day we got off the ship. I recall asking where our bus was that was supposed to take us to the airport in Fort Lauderdale, Florida. Then my memory goes blank until I remember my wife and I being persuaded to put our heavy leather coats in our suitcases despite my worry that they would be overweight. I don’t remember the stopover at the airport in Dallas, Texas but I do remember waiting for the golf cart to take us to our last flight from Vancouver to Penticton and asking my wife about getting a cart for our luggage in Penticton.

My next recollection isn’t until I was in the hospital in Oliver, a small town near where I live. I remember being put into the ambulance that would take me to the Penticton General Hospital, a larger facility. I can recall talking to the driver who I know, and had done business with in the past. Another blank period elapsed before I remember being strapped into the air ambulance from Penticton to Vancouver General Hospital the morning of October 28, 2010.

It is my wife who fills in the blanks for me. The days in the ICU are lost to me. On November 1st I was moved to a private room on the 11th floor of the Jim Pattison building and I remained there until November 24, 2010. During that time I was on the apheresis machine every day for two weeks receiving 15 units of plasma a day. I also received dialysis five times. After approximately three days of plasma treatment I started experiencing itchy hives from the treatment. To alleviate this side effect I started receiving Benadryl which promptly put me to sleep. After this intense round of daily treatments, I started getting a day off on the weekends for the next two weeks which was a nice rest for my body.

 Because I have only one kidney they were watching my kidney very closely and making sure everything in that area was working.

At one time I was taking 13 pills a day; one was Prednisone and one was a drug used in chemotherapy. Finally my platelets started to climb and my blood was starting to show improvement. Now March 2011, I am 3 months out of hospital and my vitals still show improvement. But I am very tired a lot of the time. I am told that this is because of what my body has been through and I must get plenty of rest and stay out of crowds such as airports and shopping malls.

I can’t thank the staff at the Vancouver General Hospital enough for the way they cared for me. And also I have to thank Dr. Kincaid in Penticton for his diagnosis.



Angie Schuetz, Patient

I started feeling bad around Halloween of 2007. I thought that it was just the flu or a sinus infection because I was having such bad headaches. I would feel fine for a day or two then all of the symptoms would return.

By the first week of December of that year, I had had enough of the pain and the feeling weak so I finally made an appointment with my family doctor to get checked out. By this point, I had to have someone drive me to the doctor’s office because I was having such bad headaches and I was having a hard time seeing. This would have been on December 6, 2007 that I finally went in to see the doctor. They checked my vital signs and my blood pressure was through the roof. I can't remember the exact numbers, but it was around 200 over 100 something. They asked if I had taken any decongestant medication and of course I had since I thought it was a sinus problem. Since my blood pressure was so high, they sent me home with some blood pressure medication and a note for my job that had me off work for two days.

By the time I went back to work two days later, I was feeling even worse and my vision and headaches were putting me though agony. The rest of the night is kind of a blur. I can't remember everything that happened, but what I do remember is being close to passing out and then I was in the EMT room at work. They wouldn't let me drive home, so I had to call my dad to come and get me. On the way home, my dad decided to go ahead and take me to the emergency room to get checked out, and I'm glad that he did. I don't like going to the doctor, but I was not arguing with him. I wanted anything that would make me feel better. When I got to the ER they did the standard tests, blood, urine, etc. After they had given me some meds and all the tests were done, they sent me home. We live about 45 minutes from the emergency room and at this time we were starting a very heavy ice storm. Before we could even get back to my mom and dad's house, my mom had called my cell phone and said that the ER nurse just called and wanted me back at 10:00 that morning. The next morning when we were getting ready to leave the ice storm had made the roads terrible and since my parents lived in the country, it was even more difficult to make it to the ER. My mom called the hospital to tell them the situation and asked what we should do. The ER nurse that she spoke to said that I had to get up there, my test results showed that there was something wrong with my kidneys. We finally did make it up to the ER and they informed me that I was pre-admitted to Stormont Vail in Topeka, KS.

When we finally made it to Topeka, the hospital was waiting for me and they were running every test they could come up with. No one knew what was wrong with me. I was dehydrated, my vision was worse, my headaches had intensified and I started noticing even more of the red pin prick rash (petechiae). They had a kidney specialist and a hematologist study my tests and on the morning of December 10th, 2007 I was diagnosed with TTP. That afternoon I was having a catheter put in my neck and that evening I had my first plasmapheresis treatment.

I was in the hospital for 10 days, had treatments almost every day, (the only day I did not have a treatment was the day I had a kidney biopsy) and finally on December 19th, I was released from the hospital. I had to return for treatments every day for the first week, and every other day for the next week. They slowly took me off of treatments and my blood counts finally went back to normal.

I'm very grateful to everyone who was involved with finding my diagnosis, the doctors and nurses that had to put up with me in the hospital (I was a very difficult patient) and I'm very grateful to my family for helping me though the most terrifying experience of my life. It has been 3 years since I was diagnosed and I'm doing great. I have not experienced any relapses at this point and also for that I am very grateful.



Dianna Martin, Patient & Volunteer Answering TTP Foundation


Since I have had frequent migraines before, I was not overly concerned when they started again. I added “doctor’s appointment” to my To Do list. The weekend I found what looked like little blood spots that continued to spread over my legs, arms and chest, I later learned were called petechiae, I knew something was wrong. On May 18th, 2010, a date permanently embedded in my brain, I found myself in a hospital emergency room. I was having chest pain and trouble breathing. A urine sample with a layer of red on top was sitting on the table next to me and a hematologist was explaining that I had a rare auto-immune disease called TTP. I tried to focus and comprehend what she was saying. The information should have been easy to process, this was just science something that comes easily to me. But all I had was 30 questions in my head and the hope that my dad had understood, because I certainly didn’t.

After that my life changed; I spent the next 2 ½ weeks at St. Micheal’s hospital trying to cope with the fact that I had a disease caused by an enzyme deficiency of ADAMTS13 that causes me to develop clots in my blood vessels. I was 30 years old, barely finished my graduate studies and having to worry about strokes and heart attacks. I naively tried to understand exactly what was happening to me. I armed myself with my laptop, determined to pull out all medical papers on the subject, and asked a billion questions to learn as much as possible about my condition. I dealt with the ever increasing side effects of the Prednisone and adapted to the Apheresis machine. I still could not understand why this happened to me. I received 183 units of blood products in total - I counted because I felt so indebted to those who had generously donated their blood.


By the end of my 3 month ordeal, I learned that I was a lucky patient.  I was a relatively mild clinical case of TTP, with no permanent damage and I gained a new family at St. Micheal’s hospital. I have begun to feel comfortable getting back to my normal life and month by month I breathe a little easier knowing that I have not seen those little red spots again.


I have replaced the anxiety I felt with a desire to help newly diagnosed patients cope in whatever way I can. I therefore joined Answering TTP in order to provide emotional support to new patients and look forward to raising awareness and financial support for research in the hopes of promoting therapeutic advances.
 



Sydney Kodatsky, Patient & Volunteer Executive Director Answering TTP Foundation

On September 12, 2008 a three letter medical diagnosis changed the course of my life – Thrombotic Thrombocytopenic Purpura (TTP). I was no longer an indestructible 28 year-old newlywed. I was suddenly a patient faced with a life threatening autoimmune blood disorder creating blood clots throughout my body. My eyes had already been affected and irreversible kidney, heart or brain damage from stroke could have been next. Thanks to the medical staff at Saint Michael’s Hospital (SMH) in Toronto Canada, I was diagnosed with TTP and received the best of care.

Symptoms had started about a week earlier when I removed my swim goggles and a dark hole in the center of my visual field appeared. I was not terribly worried because I had been suffering from strange visual migraines for the last 8 months and I thought this was just a new twist to the psychedelic migraine aura that usually lasted about 20 minutes. So there I sat waiting in the ladies locker room for my vision to come back so I could open my locker.

But after those 20 minutes elapsed there was no change. I gave up waiting and started trying to open my combination locker. That must have been a sight! I had to look up and away to try to see out the corner of my eye. Somehow I got the locker opened and somehow I was able to dial my cell phone to call my husband to come get me.

After waiting at home for about 3 hours for the migraine aura to clear we nervously gave up and went to a downtown Toronto emergency room (ER).5 hours later we left the ER with nothing but a migraine diagnosis. We felt a little silly for troubling the ER with a migraine.

The next day my eyes were still staticy. Something wasn’t right but I was still feeling foolish about the trip to the ER. My mom was nervous so she contacted my regular doctor whose nurse called to inform me that migraines can last 3 weeks. “Don’t worry”.

Luckily my mom didn’t quit! The next day I went to see a doctor at the Cleveland Clinic Canada in downtown Toronto. In addition to getting me an appointment to see a retina specialist at SMH, she noticed some bruising and took some routine bloodwork.

The next day before 9am the doctor called me at home to tell me to go to SMH ER straight away. My platelet’s were only 23 (normal platelets are over 150). The risk of low platelets is that your body can’t stop bleeding. I thought that it was a lab error. I put on my favorite jeans and when my husband dropped me at the ER I told him “don’t worry I’ll meet you for lunch.

We didn’t go for lunch that day. Instead I spent the day in the ER with specialists running in and out and trips to the imaging floor. Sure I was a bit tired and my vision was still strange, but other than that I felt OK. That evening my husband and I played hangman in the ER. Recently I came across that pad of paper and felt the rush of memories. I was nervous and I know that I wasn’t the only one. But we had no idea what was ahead.

That night I was admitted. It was the first of many nights in the hospital but little did I know at the time. I actually felt guilty for taking up a bed.

The next morning I was started on Prednisone to see if the drug would help increase my platelets. It didn’t.

My husband talks about the next day…In the morning he remembers coming to see me prior to going to work. I know he was nervous but I was up and about making my bed and talking about coming home that night.When he came back that evening I was in bed hooked up to an ancient looking machine that was exchanging my entire blood volume. Something was really wrong. This was my first Plasmapheresis treatment.

TTP treatment requires not only steroid medication used to counteract my body’s attempt to attack itself, but also Plasmapheresis blood treatments. When I try to explain Plasmapheresis treatment to people who have never seen it, it is sometimes beneficial to explain that it is kind of like dialysis. But nothing like the interpretation of dialysis that Susan Delphino had on Desperate Housewives. These blood treatments involve the replacement of my blood plasma with that of 10 donors during each 3 to 4 hour treatment. I have had 58 Plasmapheresis treatments over the past 3.5 years. This translates to almost 600 gifts from blood donors.

I would count the bags of plasma/ the number of donors at the start of each treatment. It was usually about 10 per treatment. Then, I would count them down one by one. I recall the loud hum of the machine and the voices from daytime TV the nurses have on to distract me. When I get a bag of plasma (a blood donor) that I am more sensitive to I might develop hives and get hot. As soon as I feel this I would tell my nurse so she could give me another shot of Benadryl to counteract the reaction from the blood product before it worsens. With every shot I felt the rush of the Benadryl. My eyelids would seem almost immediately to get very heavy and I would try to give in and sleep. But mostly only my eyes close. The rest of my body is anxiously awake humming to the rhythm of the machine. I would try to think happy thoughts to forget about the probability of a serious reaction from the treatment. Luckily  I have not suffered an anaphylaxis reaction or lung injury which can happen. As I lay there, counting down to the last bag, I look forward to the fresh squeezed orange juice my mom brings to quench my thirst at the end of each 3-4 hour treatment.

Plasmapheresis treatments are unpleasant and scary, but without these treatments I know that I wouldn’t be here today as only 5% of TTP patients survive without treatment. I owe my life not only to the faces of the doctors, nurses and staff at SMH that I have come to know over the past 3.5 years, but also the close to 600 incredibly generous selfless strangers –  blood donors. People I might never meet. My heroes.

About 70% of TTP patients will go through this treatment process once and never experience a relapse. For the others, like me, TTP continues to reoccur. I am currently facing my 5th TTP crisis. Plasmapheresis blood treatments and immunosuppressant medications (Prednisone) are not a cure. But the treatment and 600 gifts of blood from strangers has provided me more time and therefore a chance to try new treatment aimed to extend remission time.

Over the past few years we have learned the hope of new treatments to extend remission time. Over the next few years I hope we will come up with the miracle cure. But so far we still don’t know what triggers TTP, why TTP happens in the first place and what may trigger a relapse from remission, how to ease treatment or how to ultimately cure TTP. These questions remain unanswered because research is limited. TTP is an orphan disease that afflicts only 3 in 1 million people. It is too rare to make it economical for pharmaceutical companies to specialize research to find a cure for TTP. All these unanswered questions and lack of funding is why I founded Answering TTP Foundation, a purely volunteer nonprofit charity in support of TTP research, education and patient support.

Today I remain baffled as to how I ended up with this very rare disorder, and I am concerned for the future that, before September 12, 2008, I took too much for granted. What I do know is that there is much opportunity to improve the prognosis for all TTP patients. I sincerely hope you will join our efforts by volunteering your time and/or supporting our initiatives. Together we can help answer TTP.



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