When I had surgery when I was 21, I didn't improve. Instead, I spent the entire summer in pain, throwing up, no feeling in my hands and feet, and blisters on my arms. Although the doctors ran many tests, they could not come up with an answer. Finally, in desperation, our family doctor sent me to Mayo Clinic. After six more weeks of intensive tests, a doctor came in with a grave look and said, "You have Acute Intermittent Porphyria." He didn't look very happy, but I had the weight of the world lifted from my shoulders, because I finally had a name for what plagued me. That diagnosis was my present for my 22nd birthday. I had been given a barbiturate, which is an unsafe drug. I also had developed staph infection and been given sulfa another unsafe drug, all of which had made me ill.
The doctor went on to say, "We have no cure. We don't know much about the disease. All we can do is try to keep you comfortable." That was 35 years ago. I have spent a lot of time in hospitals and nursing facilities, but through it all, I have learned a lot and met many interesting people. I have been a participant in 5 research projects so hopefully my struggles have helped someone.
When I was first diagnosed I was so frightened. My mother and I spent hours in the college libraries reading about porphyria. The doctors here didn't know about porphyria either. I also wanted to find someone else with whom I could share my "misery." During a visit to expert, Dr. Claus Pierach, he told me about the APF newsletter and asked if I wanted to put my name on the mailing list. I am so glad I did.
The American Porphyria Foundation has been my support group,my fountain of knowledge,my rock! They are the "Jerry Lewis"of Porphyria--- raising money for research, supplying educational pamphlets and Emergency Room booklets and ,a web-site for doctors and patients , organizing get-togethers to help us find each other...in short,a God -send,and answer to prayer.