- Juvenile Hyaline Fibromatosis
- Interviews
Robert's interview
How did all start?
I was 2 when my parents noticed a lump on my forhead.
Do you already have a diagnosis? How long did it take you to get it?
Yes, I was diagnosed at 4 years old by a dentist.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Plastic Surgeon has been the most treatments I have gone through. I have also had been to orthopedic doctor, physical therapists,and dentists.
What has been the most useful thing for you so far?
God
What have been your biggest difficulties?
Dealing with not being able to walk anymore.
How has your social and family environment reacted? Have your social or family relationships changed?
I have had this my whole life, and have been lucky to have an amazing family, and made some wonderful friends.
What things have you stopped doing?
Walking
What do you think about the future?
Anything is possible
So far, which years have been the best years in your life? What have you done during them?
My 20's were when I had become most comfortable with my condition, I was also still healthy enough to do anything I wanted and live independently.
What would you like to do if you didn’t have your condition?
Run
If you had to describe your life in a sentence, what would it be?
I have been Blessed with many great people along my journey and look forward to what the future holds.
Finally, what advice would you give to a person in a similar situation?
You're not alone
