- Ehlers Danlos
- Interviews
pianocat_61's interview
How did all start?
When I was a child, I noticed I had super stretchy skin and very bendy joints. Before age 10.
Do you already have a diagnosis? How long did it take you to get it?
I do. I am 33 and just received a formal diagnosis a couple of years ago...about 2016.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Addison's - Steroid pump (off label) with solucortef. Endocrinologist!
What has been the most useful thing for you so far?
Just having the steroids to keep me alive. There is not a synthetic replacement for Cortisol.
What have been your biggest difficulties?
Fatigue and pain.
How has your social and family environment reacted? Have your social or family relationships changed?
They mostly don't have a clue and seem to not want to know. Yes, I've lost all my friends.
What things have you stopped doing?
All social activities, very little going out to do enjoyable things.
What do you think about the future?
It's very bleak, I see my future in bed or stuck in my house.
So far, which years have been the best years in your life? What have you done during them?
I've been progressively getting worse, I don't know that I've had "best years." I've had some good experiences traveling despite pain and fatigue. I've went to London, Scotland, Ireland, Greece, Turkey, Africa and Caribbean.
What would you like to do if you didn’t have your condition?
I'd have a family and a huge friend list, be busy raising kids and all the activities that accompany them!
If you had to describe your life in a sentence, what would it be?
My life is invisible, people don't see me nor believe me when I say I am very sick.
Finally, what advice would you give to a person in a similar situation?
Find a couple of great friends/family that will believe you, you can trust and be there no matter what happens. You have to keep going, because you're going to feel bad wherever you are!
