Carrie Hunter

Type of Porphyria

Porphyria Cutanea Tarda (PCT)

Carrie Hunter was diagnosed with genetic PCT at age of 33. Until December 2010, she had no signs of PCT. Soon she began to notice her hands were getting cuts and blisters and were overly sensitive, but she didn’t know why and neither did the many doctors she visited, including a dermatologist who ran many tests and biopsies. Still there was no answer. Even after being sent to the Comprehensive Cancer Center, it still took six months and four more doctors to diagnose her correctly. That occurred only after a trip to the Caribbean and a subsequent hospitalization that her diagnosis was discovered and a treatment plan started.

According to Carrie, “From September to December I had a phlebotomy every week to regulate my ferritinand porphyrin numbers. My doctor consults with an expert to help keep my levels normal, especially since I still have major issues with sensitivity to iron and foods. I have made big changes. I don’t drink alcohol, eat any meat or iron rich foods or eat things cooked in iron and I avoid the sun. I once heard someone describe it as shadow jumping... and that is exactly what I do.” Despite her many ongoing challenges with PCT, Carrie volunteers at the Children’s Hospital near her home in Denver. Carrie wants to give back because she  says, “I have three beautiful children and I live a fulfilling life. Porphyria Cutanea Tarda  has been difficult to adjust to but has not ruined my life!! I am grateful to APF and all the wonderful folks n board and to my APF Facebook friends, who also have made this all easier to deal with--I finally don't feel so alone!”   Carrie now has become a strong advocate for porphyria and even serves on the APF Member Advisory Board.  Most recently, Carrie has assisted in the development of the activities and structure for Global Porphyria Awareness Day.