I was diagnosed at a young age. As a child, I would push myself to do lots of stuff I shouldn’t have. We took lots of holidays on and around the water. I always suffered horrific reactions that would have me climbing the walls in agony. But I would still go back for more the next time. I have a seven year old daughter, and since having her, I have been a lot better at restricting what I do. Mostly, I try to recognize the warning signs of when I need to get in the shade and stay there! I do get angry with myself and frustrated, especially in summer when my daughter wants to do things like go to the beach. We live in New Zealand, and there's water everywhere, and I simply can't go. I am very fortunate to have a family that takes her to do those things and frequently takes her for holidays during the summer months that I cannot handle. Now she's older and understands why I can't do these things, and she is always the best at looking after me if I do happen to have a reaction!
Type of Porphyria:
Erythropoietic Protoporphyria (EPP)