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.

3 thoughts on “An Up Hill Battle: Acute Intermittent Porphyria”

  1. JESSICA BECKNER says:

    I also have AIP and have been passed around more doctors in this state than I care to think about. No one knows what it is, so they just send you to someone else who does the same thing. In the mean time, I get no better and feel as if there is nowhere left to go.

  2. Joyce Gould says:

    Jessica, think I’ve seen you on the closed forums? I know this ridiculously late, but I’m only now checking this site out after a long absence. Have found out more and more about AIP–like there are three subtypes that are no longer recognized by US experts. They only look at urine biochemical which is known to be very problematic. The subtypes are differentiated by blood products–not urine. Have made complaints above APF. Please contact me either by email or on the closed forums (I think I remember your name from there).Sorry for such a delay; finished book and Jill’s heme deficiency severely intensified.

  3. hello im in the same boat … I would like to set up a blog and track the names and families and inform them ! I am an expert on the names ! Im bob bishop and im making a face book page today ,

Comments are closed.