By Monica Branch picture of feet picture of hands
  Description: Ectrodactyly is a birth defect that causes the hand and/or feet to be malformed. In this case, the middle finger or toe is missing and the two right toes or fingers to the right of the missing ligament are fused together. This has led people to call this disorder lobster claw syndrome, because the deformed hand or foot looks similar to a lobster claw. The occurance of Ectrodactyly is nearly one out of 55,000 to one out of 70,000 births.(1)No enviromental factors affect/contribute to this disorder.This is a physical disorder, and people act just as a normal human being. It is just the deformation that makes them look diffrent.
Treatment: Currently there are many treatments, but most are for hands. There is pediatric therapy to help learn how to pick things up, learn to write and other things needed to know for a healthy lifestyle. Also many who unfortunately pocess this disease wear prosthetic hands to help them do things in daily life. There are many different types of prosthetic hands that a person could choose from. But the most popular, are the body powered ones. These prosthetic objects are maneuvered by a harness that can catch unrelated movements such as a shrug of the shoulder. It then carries that action through a cable system to a terminal device like a hook or hand. There are two very important kinds of terminal devices. One is the voluntary opening device that is restrained by springs or rubber bands. This makes it simpler to hold and carry objects without trying, but its grip strength is leveled to the power of the springs or bands. The second one is the voluntary closing gear. This one includes a powerful grip, but needs force from the user to hold and move objects. Both have been combined to open and close in the same structure. Two models have been made so far. One using a cable, cam, and springs, the other using a pulley, shaft, pinion and a cable.
 1) The cable is settled and the hook is closed
2) The cam thrusts the hook open against the springs force functioning like a voluntary opening device
3) With the closing spring the cam pulls the hook closed working like a closing voluntary device
 1) The cable rotates the pulley which on the right, pushes the moving finger through the pulley
2) The shaft glides so that the moving finger is pushed by the pinion on the left
As you can see, this treatment is very affective, for it enables people to pick things up and move objects with effort, or without. So far this product has had no bad outcomes and works as efficiently as it says it does.
A common treatment is just regular old surgery. People who decide to have a surgical procedure done on their hand or foot usually do it " for show". Necessarily meaning that they have their hand or foot job done. ( But remember, its mostly for show). Now these are more manual compared to the new and improved more futuristic body powered arms. The i-limb hand/arm is a very efficient body powered device that is formatted and guaranteed to work for any hand malfunction. This hand appears as a normally functional hand, and works like one too.
   Research: As I have said in the section above, scientists have created a prosthetic figure to treat this. Scientists have already concluded that there is no cure, but a treatment to cure the suffering of those with disorder so they can function and do things . They have taken the prosthetic subject and started to expand the research of it. They have began to think, experiment then discover other ways of a prosthetic hand working. One man named John Bergmann started working on a Lego hand. He has created three versions of it . They have almost all of the same features that a regular hand possesses:
Current Events:
Ectrodactyly has not been understood for years eventhough it has been around for decades. The podiatry management magazine has an articel that gives specific information on how to correctly diagnose and effectively treat ectrodactyly. To read about it and even test your knowledge visit http://www.podiatrym.com/cme/Jan09%20CME.pdf
Genetics: Ectrodactyly is an autosomal mutation trait, and is also a dominant disorder. Meaning it is shown more over the recessive gene.There are alternate types of the disorder but each are connected to a dissimilar genetic mutation. Type 1, the form most present has been shown to be a mutation on chromosome 7 in a region that has two homeobox genes: DLX5 and DLX6. Both genes are close to SHFM1( split hand/foot malformation Type 1). I have once seen an episode special on TLC called Lobster man. This show told of a man with Ectrodactyly who married a woman without this disorder. They had two kids, one with the syndrome and one without.
This punnett square explains the chances of getting Ectrodactyly with one parent having it and one not.  As you can see, it is a 50/50 chance for the offspring to inherit the disorder from the parents.
A Day in the Life:
The emotional actions of most who contain this disorder are depression, irritation, and even discouragement. It affects their lives because knowing that their hands or feet are shaped as a claw, they are brought to this level of sadness. Also,sometimes not being able to do some of the activities they want/need to do makes them feel this way. I am not saying that all who have this disorder feel this way. Some just go on with life and learn to live with what they inherited, happy as can be just to be alive. Some just take it in and live with it. Some are so self concious that they obscure themselves from all of the world or get surgery so they don't look or feel like a freak. Some just go on with life as a normal human with feelings. And yet, all with this disorder know that this is how they were born, and they will never forget it.
A day with ectrodactyly
7:00am- I wake up and struggle to take my pajamas off and put my clothes on
7:20am- I wash my face and comb my hair. This was not easy.
7:30am- I reach for the cereal box realizing for the billionth time I need assistance to fix my breakfast.
8:00am- I am off to catch my school bus. This is when I start getting very self conscious. I worry about what people think and what they say about me. I keep my hands in my pockets.
8:30am- 3:00pm- I am in school. I am not able to use pens and pencils very well so I am allowed to use a key board to take notes in class. I have gotten very good at using it. For PE today we are doing hockey so I sit out on the bench since I am unable to use a hockey stick with my disorder. I feel so excluded that I hide my face in my jacket. At least it is Friday.
3:15pm- Yeah school is over!! Mom has finally made the arrangements to get my new prosthetic hands. I am getting the i-limb. This is the newest of all prothetics.
6:00pm- It has not taken me long to adjust to my new hands. I am eating dinner without help and I am not making a huge mess. It is fantastic!
7:00pm- I am washing up and putting my pj's to relax and go watch TV. This took the least amount of time to do. I never thought this was possible.
9:00pm- I go to bed feeling good for my lifes journey ahead and the success I hope to achieve.
 Tim Smith's StoryTim was born September 11, 1989 with missing fingers, and feet split down the middle with two toes facing one way and the other two facing the other way. His parents did not get much support from their son's pediatrician and it took a while to get the correct diagnosis and the correct doctors to help the family deal with his disorder. Tim is now 17 and senior in high school. Besides his differences and physical challenges he is and always will be a happy, high spirited and self esteem....more about Tim at http://www.nfed.org/support_smith.asp  Allyson Kelso'sStory
Allyson was born with two fingers on each hand and two toes on each foot. She also had a bilateral cleft lip and palate. Because of the cleft lip and palate she was not able to nurse from a bottle when she was an infant. She spent the first hours with her mom but was then moved to the NICU. She has undergone many surgeries and procedures and is almost completely blind Allyson is a high spirited up beat little girl and the joy of her parents life. Read more about Allyson and her family at http://www.nfed.org/support_kelso.asp
Both Tim and Allyson are enduring this disorder with a positive attitude and to the best of their ability. They both are lucky to have the support of the National Foundation for Ectrodermal Dysplasias http://nfed.org.
Dog with Disorder:
Vocabulary: (2)
Bonus: Ectrodactyly Word Search E D G Y D E C D R W S H P T H Find all of the following words:
N I W R B D Y D Z P N I D E E VOLUNTARY PROSTHETIC TERMINAL Y G S P O P V T C I E H C H T PULLEY PINION CAM O C J L U L J T A N Z B O A H DISORDER HOMEOBOX BILATERAL I I X L U I X S M I E B E O C MUTATION RECESSIVE J T L O D E L N C O Y M S E G C E D F B H A L A N I M R E T Y H I D H O R E C E S S I V E O T U S T A E A M Q L E Y G H H S N F W S T M U T A T I O N C O Z H S R A R O H M S E K R Y R A T N U L O V H S G N S F E P L C E D I S O R D E R N P T N B H D O B G S R V R R L Y S C Q N P G U S Q O P W E E N Refrences/Citations:
1) Wynbrandt, James. Medical Syndromes and Birth Defects, Third Edition. New York, New York: Infobase Publishing, 2008. 2) Dictionary Dictionary.com ." Dictionary.com Dictionary.com . 22 Jan. 2009 http://www.dictionary.com
Bibliography:
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