- Porphyria
- Interviews
Angelrose's interview
How did all start?
It runs in my family.
Do you already have a diagnosis? How long did it take you to get it?
Yes. Years. They always assumed I just had a sun allergy and that was it.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Herbals are the most useful.
What has been the most useful thing for you so far?
Staying out of the sun.
What have been your biggest difficulties?
Working and avoiding sun.
How has your social and family environment reacted? Have your social or family relationships changed?
No change. I have lived with it all my life.
What things have you stopped doing?
I can do a lot of things, I just have to stay out of the sun.
What do you think about the future?
I make plans, just like everyone else.
So far, which years have been the best years in your life? What have you done during them?
All of it. I enjoy every moment.
What would you like to do if you didn’t have your condition?
The same things I do now.
If you had to describe your life in a sentence, what would it be?
I wear my sunglasses... all the time. lol.
Finally, what advice would you give to a person in a similar situation?
Insist on testing for whole blood as well as porphyrins. Too often they misdiagnose because they don't test the whole blood. Anything 40 and over could mean you have it.
