”My name is Kristen. I have been diagnosed with Porphyria for about 11 years ago roughly. The doctors did not know what was wrong with me. They were doing every imaginable test and kept referring me and my mother to so many other different specialists. The tests were coming back negative for everything. Eventually, they did not even believe my mother anymore and assumed she was making everything up. There was a doctor in the Bronx, New York, Doctor Robert Marion, at Montefiore Hospital. He was a new doctor and just studied the signs of Porphyria. After questioning my mother on the medications I was on and my symptoms, he realized what I did have. My mother knew that there was some weird rare disease that her father and others in her family had but, could not remember it. Finally, after Doctor Marion asked questions and said the name, she confirmed that is what our family had and my grandfather died of.
I started associating with the American Porphyria Foundation in 2003 at the age of 16. Thanks to Desiree Lyon and Yvette Strange, I have been able to fight this. I still go through my trials and have to go in and out of the hospital for treatments. "The American Porphyria Foundation has guided my emergency room doctors on how to properly care for me not just emergency room, but also in accordance to what I believe in religiously with my conscience."
There is a song by Melissa Etheridge called, I run for life. “There is a verse says, "And they cut into my skin and they cut into my body, but they will never get a piece of my soul."
No matter what the doctors do I will always have my soul and my faith in Jehovah God no matter what this disorder brings. This is my story of Porphyria.”