Friday, April 22, 2016
Kathryn Nelson and PCT Journey!
My Porphyria Cutanea Tarda (PCT) experience began roughly seven years ago. At the time I was living in Irving, Texas. When lesions appeared on my face, forearms and legs, I thought that perhaps it was related to Psoriasis, an autoimmune disorder I had since I was a child. As a result, I resorted to a fairly common approach to Psoriasis which is exposure to UV rays. I spent an hour or so every afternoon in the sun, but more lesions developed and the existing ones grew in size. Repeated visits to my Dermatologist resulted in a variety of diagnoses including eczema, hives and finally a "picking" disorder which basically meant the doctor believes you are picking at your skin causing sores and infections. His primary reason for this was that the sores appeared only where I could physically reach the area, in other words, there were no lesions on my back or the backs of my legs. I pointed out that as a forty plus year old woman, I didn't think I had suddenly started to pick my skin but he was not deterred.
"Remember....Research is the key to your cure!"
Bright Ideas! This is a place for kids to learn from others with EPP, to share their own tips and tricks on things like what to wear...
Happy Thanksgiving everyone 2017
EXCITING ANNOUNCEMENT!! You can now receive FREE genetic testing (DNA) and counseling for acute porphyria. DNA can tell a person if the...
4. The Pain Scale Is Useless to Us There’s that pain scale, numbered one through ten, with increasingly dour expressions on the faces...