My name is Jackie Cory and I have Erythropoietic Protoporphyria (EPP). At a very early age I started complaining of extreme burning in my hands, knees, face, any exposed skin. I would cry & wail but no one understood. At 5 years old I remember being put in a bathtub full of ice & water. It helped but only for awhile. When I went to camp in 5th grade my hands swelled shut so I couldn't make a fist. I was so embarrassed & in pain. In junior high I couldn't do all the cool things my friends did like go berry picking or hang out at the beach. I was different & no one understood me. My parents took me to various Dr's but that only led to cortisone shots, allergy pills, special soaps & tranquilizers. I can still remember the awful taste of milk with atarax in it. I couldn't sleep, I would get up at night, run my hands under cold water then blow on them till they'd dry, then get up & do it again. I was always seeking shade, positioning my hands anyway I could to be hidden from the sun, in pockets, back to the sun, under my legs... anywhere but in the sun. I could never explain it to anyone, after all my hands weren't red or hot to touch, must be in my head right? One day when I turned 35 I went to a dermatologist to see about getting some "tanning pills" I'd heard of. I thought since I'd never been able to tan this might help me stay out in it & feel "normal". He said it looked like I may have Erythropoietic Protoporphyria (EPP). He did a urine test & right there & then changed my life with a diagnosis. Now I had a real disease!!! All my suffering & pain was validated. At that time I had 2 boys aged 3 & 5, neither with any symptoms. I learned of sun protective clothing & uva/uvb sunscreen. Luckily at this age I didn't care if I was a "sun nerd" with big hats, gloves, long sleeves... I now had a real disease! Learning of the American Porphyria Foundation was another huge plus. I could actually read about other people like me! A few years ago I participated in the clinical trials for Scenesse in San Francisco & on one occasion actually got to talk with 2 men that also had EPP. It had been my life-long dream to actually meet someone else who had endured this monster. Thank you APF!!!! I am now 62 with a loving husband, two grown boys & a wonderful grandson that all love & accept me for who I am, "sun nerd" and all.
I would just like to mention that my brother also has a rare genetic disease, Alpha 1 Antitrypsan Deficiency. We had an older sister who was born with sclerosis of the liver & died at age 5 due to it. We'll never know which genetic disease contributed to that but wow, how rare to have 3 children, all with a rare, unknown disease back in the 50's.
Thanks so much for taking the time to read this. Knowing that other people understand and care means so much
If you would like to share your story please email me at Amy.firstname.lastname@example.org. Many can learn from you! Please share.
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