Acute Intermittent Porphyria. I didn’t know I even had this disease/genetic defect until I was 53 years old and then I had no clue what was wrong– nor did any doctor or test.
After an article in the newspaper, Ask a Doctor, was found by one of my neighbors, she said, “this sounds like your symptoms.” At last a possible answer to all my pain and misery! I took the article to my doctor and he said, “Oh, I’m sure you don’t have that…the only patient I ever had with Porphyria was from Wales.”
WELL, my mother’s family was from Wales! Thus, I found out what I had and began trying to figure out how to treat it and with the help of this doctor and trial and error we have it under control. I have watched the Health Channel on television and figured a lot out for myself. One thing is after an accident, and in the emergency ward, I was given a tetanus shot and that exacerbated my condition. I had to figure out why my entire body and mind changed after that trip to the hospital.
Then I moved out of the area and had to find a doctor, another traumatic experience. They didn’t recognize the disease and didn’t want to treat me with the medications I had been on for years! It took me a solid year to find a doctor who would treat me, and during that time, I was barely functioning. I have since moved back to my original home and have my precious and knowledgeable doctor back. What a relief it is for me, as this strange condition causes mental illness as well as severe nerve pain and many other symptoms which makes it so difficult to get a diagnosis and treatment.
I read online information continuously and update my doctor. I have had to treat myself as daily living causes problems for me. If the air has too much car exhaust, I get sick from the fumes as alcohol is the worst contributor to my attacks. Then the list of medications that are unsafe for me is the size of a book. I keep walking up hill and hold my head high as I go. I wish all AIP carriers the best of luck and if I can help one person with my story, praise be to God.