Tuesday, May 13, 2014

Read about Carol Coons and PCT

Read about:

Carol Coons

Type of Porphyria: 
Porphyria Cutanea Tarda (PCT)
I have PCT but was misdiagnosed many times since I first noted that I was blistering in 2004. Three dermatologists in a row were unable to find out what was wrong with me even after I had a biopsy. My ferritin level was accidentally discovered at an unrelated clinic visit, and it was over 900.
At that time, I was told to go to a hematologist, who said that that my only problem was hemochromatosis, even after I showed him my blisters and sores. I did have a genetic H63D heterozygous defect. I had a port put in place and to date, I have had over 45 phlebotomies. My internist sent me to get a second opinion, where I was told that I had PCT. As the treatment was the same, I had not gotten a port or had the other phlebotomies in vain.
I have no idea how I developed PCT, but now I try to stay out of the sun, but it did show up while I was taking Paxil for my fibromyalgia pain and spending a week at the beach. Now I try to stay out of the sun and am careful not to eat too much iron. My liver is fine now, and fortunately I did not need a liver biopsy.

Thank you Carol for sharing your story with us!

 "Remember....Research is the key to your cure!"

1 comment:

  1. Natural Herbs Clinic is a useful source of Treatment for Porphyria information, Porphyria Herbal Remedy is one of the best herbal remedies which use for the treatment of Porphyria. It treat the disease with out any side effects. Because it made with herbal ingredients.


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