Interview with a patient

The following is a transcript from a fake interview conducted with an Addison's disease patient.

Includes conversations overviewing Addison's disease, its impact on the patient and community, and its evolution in history.

Interviewer: Hello and welcome to the interview, Mr. [REDACTED]. We're so glad you could join us today to share your experiences. 

Patient: Thank you for having me.

Interviewer: Now, you unfortunately suffer from Addison's disease, yes? Could you tell us bit more about that?

Patient: Uhh, sure. Addison's disease is a diseased caused by the insufficency of certain hormones produced by the adrenal glands. There hormones include things like cortisol which help with metabolism and aldosterone which helps with blood pressure. I was diagnosed a couple of months ago, right after my 35th birthday. I actually have a family history of Addison's disease. My mother was a carrier of it, and my grandmother had suffered with it all her life.

Interviewer: Would you mind telling us how that impacted your family?

Patient: Yeah, of course. Since my mother was a carrier, it didn't affect her at all. She was born in the mid 90s, and genetic screening didn't really exist back then. So we didn't know she was a carrier until I had been diagnosed. It didn't really impact her all that much aside from her mother. My grandma wasn't born in a time where it was easy to be diagnosed. Even though Addison's disease had been discovered in 1855, it was the Great Depression, and even during good times diagnoses were expensive. My grandma just lived with the symptoms and tried her best. My mother would tell me stories of her childhood, watching her mother struggle through fatigue, weakness, and joint pain because of it. My grandma didn't know what it was and she wouldn't know how to deal with it until much later on in her life. My family thinks the late diagnosis and treatment was one of the causes of her early death. 

Interviewer: I am so sorry to hear that. Do you feel like there's many differences between the way society viewed the disease back in your grandmother's generation to present times?

Patient: I mean in my opinion, there was never a huge stimga around Addison's disease or anything like that. Like a lot of the symptoms don't really impact anyone externally aside from the hyperpigmentation. In my grandma's generation, like I mentioned before, there was hardly a way to diagnosis because of its lack of external symptoms. I honestly think that people who suffered from it just went on with their daily lives and maybe looked for home remedies for their feeling of weakness. In all honesty, they probably thought it was another disease affecting them. Wasn't Addison's disease discovered because they were researching anemia instead? I feel like even now there isn't a huge label attached to the disease. It's more like, "You have Addison's? Cool." Some people like calling it an invisible disease, which sometimes it is, but most people are really respectful about it when you let them know.

Interviewer: I suppose I can agree with you on that. Now returning back to you, how has your diagnosis and treatment been going along?

Patient: It's been going great. I recently was started on hormone replacement therapy and I've been taking prenisone, which is a corticosteriod steriod medication, twice a day. Sadly I'll have to take it for the rest of my life, but it's better than dying! As for my diagnosis, I was made aware pretty quickly. Once I start showing the same symptoms as my grandma, the fatigue, sudden weight loss, and hyperpigmentation, my mother told me to immediately check with a medical professional. I've been spared the worst at least. 

Interviewer: And has the disease affected your daily life in any way?

Patient: Oh for sure. Like I mentioned before, I have to take my medications for the rest of my life, which really puts a dent in my wallet. I need to watch my diet, specifically my salt intake. I also need to control my stress in order to not undergo any 'adrenal crises' and overwork my adrenal glands. It's difficult but I'm managing. 

Interviewer: What about your community? How has Addison's disease influenced your interactions within your community?

Patient: It's been a mixed experience. My family has been an amazing support, and has definetly helped me. Because we know now it runs in my family, it definetly helps. I understand that it isn't always that way though. For some people with the same condition, they might not have support. Some people in the community might not believe them or dismiss their worries, you know? Espeically since it can be an 'invisible disease'. That's what happened with my grandma. Her community mostly ignored her and it really affected her mental health. But with me it doesn't affect me that much because people are accommodating. And honestly? 15$ dollars per bottle doesn't really affect me in the short-term, but it might in the long term. Either way, I feel like I still go through life in a pretty normal way. It's the future, so people have become more tolerate and understanding since my grandma's time. 

Interviewer: To finish off, what kind of action would you like to see moving forward to support those suffering from Addison's disease?

Patient: Increased awareness in general is always nice. I know that Addison's is often taught in highschool biology, which is nice. So I don't have much qualms about education because I feel like more youth in general know about it and hormone detection is improving every year. It's incredible to think that a couple of years ago, we couldn't read hormone levels as easily as we can now. I guess the main thing I'd want is more funding for treatment. Curing Addison's disease is a lifelong effort. I feel like my quality of life would improve tremdously if I didn't have to pay for medication every month. By investing in treatment options I'd hope to be rid of it forever and finally live a worry free life without Addison's. Of course most of this is because my type of Addison's is genetic, so the disease was born and will die with me. For other types of Addison's it's a lot easier to cure. Maybe in the future some genius might finally discover how to completely repair the adrenal glands of humans from the womb. You never know. 

Interviewer: Well, that's all the time we have today. Thank you so much for sharing you insight on this issue. We really appreciate everything you've told us and we wish you good luck on your journey!