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Member Story Diana Van Houten PCT

DIANA VAN HOUTEN

TYPE OF PORPHYRIA
Last summer I was babysitting my four grandchildren at my daughter's house while they were on vacation, I noticed a large blister on my hand and thought I had splattered grease on it. After I went home a week later, I had more blisters on my hands of different sizes. I had a really big one on my right hand, and every time I shook hands it would hurt.
A friend suggested that I should sterilize a needle and drain it. I did so and put Neosporin on it as well. Needless to say it got infected, so I went to the Dr. and he started running tests on me. After several tests, he found my liver enzymes were high, so he sent me to a dermatologist who did a biopsy of a small blister and had me do the 24-hour urine test. That is when I found out I had Porphyria Cutanea Tarda (PCT).
Next I started the phlebotomies. On Dec. 1st, the 8th time the Dr. did the blood draw, I got what I thought was the flu and was so sick, I could not go anywhere without falling back on the couch, out of breath and I was very weak. My best friend told me to call the Dr. and she would take me as I couldn't drive. I did call and she took me to see my regular doctor. His nurse walked in and took one look at me, and said I was anemic. The doctor checked me and said I needed iron. I told him I couldn't because of my porphyria.
Later my other Dr. called me after they all talked and said that I would just have to rest. I eventually started felling better.
In January of this year, the doctor took another blood test that was better. Now I am going in every three months for my blood checks. The scars on my hands are fading slowly. My granddaughter says your "owies" are better and I can hold your hands, and my skin is not so fragile as it was, although I am a grandma and most grandmas have fragile skin, it should not be that fragile yet.
I was noticing some of the other symptoms of PCT, and I just went to the Dr. complaining of pain in my arm, hands, and insomnia.
Where I live they don't know much about porphyria. My life is so much better now, but I still stay out of the sun, avoid alcohol and estrogen, and yes my problems could be much worse. When I think about the plight of other people, I thank God every night for my health. Good luck to everyone.

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