- Camurati-Engelmann disease
- Interviews
Mattias's interview
How did all start?
It was noticed at age 4 because I did not want to walk
Do you already have a diagnosis? How long did it take you to get it?
I got diagnosed at age 15
For what medical specialties have you been treated? What has been the most useful specialty for your?
None
What has been the most useful thing for you so far?
Absurd humor is my only coping mechanism
What have been your biggest difficulties?
Bone deformation and pain and being unable to walk
How has your social and family environment reacted? Have your social or family relationships changed?
Not really
What things have you stopped doing?
Trying to work and exercise.
What do you think about the future?
I try not to.
So far, which years have been the best years in your life? What have you done during them?
Age 12-16 were alright when it comes to the disease. 25-35 has been the best when it comes to love
What would you like to do if you didn’t have your condition?
Have a better education and be able to work.
If you had to describe your life in a sentence, what would it be?
It could be better.
Finally, what advice would you give to a person in a similar situation?
Accept your condition and try not to think about what might be. Instead try to focus on what is. And don't lose yourself in the pain.
