My first memory of being sick was in early elementary school. Something just wasn’t right as I felt really sick all the time. I couldn't breathe. I had chest pains and stomach pains which caused extreme nausea. By the end of the day my head was pounding, my skin was burning, and I would ache all over. I thought that was just how life was.

I was diagnosed with erythropoietic protoporphyria, an extremely rare genetic disease that explains the symptoms I have had since a very young child. Symptoms without any visible manifestations. Symptoms that only I can feel. Symptoms that everyone had already doubted were real, including my very self.

I learned how to manage my porphyria myself. When I feel an attack coming on I try to get it under control right away. I had a stressful job providing medical care in disaster zones, but I would communicate with my team and get switched to a less stressful role when I needed to. During an attack I try to get lots of fluids, carb load, eat scotch mints and try to get a lot of sleep. I always have scotch mints around and always stay hydrated- it’s a bit of a joke in my family that grandma always needs her water bottle.

In 1975, after suffering from an extremely long illness, in and out of hospitals, I was diagnosed with Hereditary Coproporphyria (HCP). At that time the medical textbooks contained one small paragraph of information on porphyria and that was scary and erroneous.

Meet Leslie, an avid photographer with a love for gardening and curling, who lives with porphyria. This skin condition causes a serious sensitivity to light that results in painful swelling, burning, itching, redness and blistering of the skin.

Ava suffers from a rare genetic disorder called erythropoietic protoporphyria, a reaction to the sun which causes severe pain and blistering. Ava feels “good” about being able to help the society out.