- Hereditary multiple exostoses
- Interviews
Kaya's interview
How did all start?
I've had it since birth, but they diagnosed it when I was 18 months.
Do you already have a diagnosis? How long did it take you to get it?
Yes, I was 18 months old when they diagnosed me.
For what medical specialties have you been treated? What has been the most useful specialty for your?
For HME
What has been the most useful thing for you so far?
Heathpack, Blankets and lots of painkillers and operations.
What have been your biggest difficulties?
Accepting HME
How has your social and family environment reacted? Have your social or family relationships changed?
My social life changed alot because all my friends thought I was faking it because they've never heard about HME before. My family relationships stayed the same. My mum has HME too.
What things have you stopped doing?
I can't move too much. I can't run or do anything to active.
What do you think about the future?
I hope that they will make a cure for HME or atleast a painkiller that helps against the pain.
So far, which years have been the best years in your life? What have you done during them?
Probably when I was a small child. Everything was so much easier back then.
What would you like to do if you didn’t have your condition?
I always wanted to be a ballet dancer or just a dancer. And I really want to ride a horse.
If you had to describe your life in a sentence, what would it be?
My illness has shaped me, But it does not define me.
