- Parry-Romberg syndrome / Progressive hemifacial atrophy
- Interviews
Scott's interview
How did all start?
Started displaying in my late 20s on my face, however, displayed signed undiagnosed previously. Loss of tissue and hair on one side of my face, eyelashes only on one side, issues with eyesight
Do you already have a diagnosis? How long did it take you to get it?
Diagnosed when I was around 2010, took years of tests and checks
For what medical specialties have you been treated? What has been the most useful specialty for your?
Removed my eye, which solved horrendous headaches; wish I had done years back. Fillers were shocking and made me feel worse
What have been your biggest difficulties?
Sleeping at night, feeling your face drop. Stress
How has your social and family environment reacted? Have your social or family relationships changed?
Family have been so supportive throughout
What things have you stopped doing?
Getting stressed at things
If you had to describe your life in a sentence, what would it be?
Happy and content
Finally, what advice would you give to a person in a similar situation?
If the headaches are so bad, remove your eye through surgery, it's not worth the pain.
