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#NPAW2017 Kelly Story & PCT

Kelly Story

Porphyria Cutanea Tarda (PCT)

My name is Kelly Story and I live with my husband, Chad, and two cats in Kissimmee, FL. In July of 1999, one month after our wedding, I was out of town on business, and I noticed tiny little water blisters all over my hands. The blisters didn't itch and were not painful. Although I found them to be very odd, I didn't worry much.
Over a short period of time, my skin became extremely fragile. It seemed like almost anything would cause a scrape on the skin of my hands. Plus, the blisters got much worse. My hands looked like something out of a horror movie. I was so embarrassed all of the time, and I cried a lot. I went to a dermatologist. After two visits, he told me that he was fairly certain that I had PCT but suggested that I go to a specialist. After several humbling tests and weeks of waiting, I was officially diagnosed with PCT.
The doctor said that I would have to start phlebotomies. This meant that over a pint of blood would be taken from me at one time. Even after I began the phlebotomy treatments, the blisters moved to my arms. These blisters itched tremendously. My poor husband didn't know what was happening, because, I would wake up in the middle of the night with a frenzy of scratching and crying. The itching was unbearable. I would feel so guilty afterwards. After all, I was receiving treatment for my condition and knew that I did not have a fatal disease. There are other people in the world with so much more serious problems. But, it was still uncomfortable, and my hands and arms were just so ugly.
I was tired a lot during the six month or so period I was having the phlebotomies. The doctor said that I would most likely be temporarily anemic. This was the result of having the blood taken from me. I used to do aerobic exercises at least four times a week, but that stopped. I also got headaches quite often. Finally, I was in remission. No more cuts, no more blisters, and no more itching.
I lived for a while with the dark scars on my hands from all of the sores and blisters and several lighter ones on my arms. But now, the scars have faded tremendously. You can't see any on my arms, and the ones on my hands are very pale. It may sound vain, but I never thought I would have pretty hands again, and now I do. To this day, I still cringe if I accidentally knock my hand into something. But, I am always relieved when I look down and see no scrape or cut.
Since being diagnosed with PCT, I've taken estrogen and alcohol out of my life, and I try my best to stay out of the sun. It's hard living in Florida, but I just keep applying that good old sunscreen. I'm very blessed to have such a supportive husband. I told Chad on our first date that I was high maintenance. Boy, neither one of us knew how much!
                            "Remember.....Research is your key to a cure!"


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