- Ehlers Danlos
- Interviews
Cissi's interview
How did all start?
Most likely at birth, always been hypermobile, strange symptoms from my whole body. Often heard "oh, that's interesting, I have never seen that before" from doctors.
Do you already have a diagnosis? How long did it take you to get it?
My GP was on a vacation, so I met another GP when I could not walk due to plantarfasciitis. He asked if I had EDS, I said no. Went home and read a bit, it was of course spot on. Went back to the same doctor and asked if it could be EDS. He asked a bit, checked the Beighton scale, mumbled something like "oh, yes, I think it can be EDS". (He was a quite odd person, but knowledgeable, later found out he had just got a doctorate in Rheumatology)
For what medical specialties have you been treated? What has been the most useful specialty for your?
More or less all specialists, over the years. Mostly odd symptoms from eyes/ears/skin/GI/orthopedics etc...
What has been the most useful thing for you so far?
A good GP that listens, takes tests and refers to specialists if needed!
What have been your biggest difficulties?
To be taken seriously. I look healthy until I pass out...
How has your social and family environment reacted? Have your social or family relationships changed?
Family is supportive. Close friends understand. Some might think that I talk too much about health issues.
What things have you stopped doing?
Thinking that I am lazy...
What do you think about the future?
I'm a positive person, it could be worse. I see myself as healthy after all.
So far, which years have been the best years in your life? What have you done during them?
My last 3 years, started a new single life!
What would you like to do if you didn’t have your condition?
I can do what I want, I don't let my health get in the way.
If you had to describe your life in a sentence, what would it be?
Good but with a bump here and there.
Finally, what advice would you give to a person in a similar situation?
Take one day at the time, try to do everything you want, try to find a way.
