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Acute Intermittent Porphyria: Joy Lives With Avoidance and Caution


Joy has to avoid a myriad of things in her life due to Acute Intermittent Porphyria, but does so happily.

I was 18 years old in 1968 and experiencing some fairly “typical” rites of passage for girls at that age: my first boyfriend, my first alcoholic drink and bouts of not eating. This turned out to be a recipe for disaster.

I was at a bowling alley one afternoon with my girlfriend, Mary, and “The Girl from Ipanema” was playing on the jukebox. I should have been in my element, but instead, I was in such pain.

I ended up in the ER, not caring one iota that there was a flurry of activity around me—my parents, doctors and nurses were all trying to figure out why I was in such pain. I was throwing up, had a headache, high blood pressure, and the pain in my arms felt like fire. My legs and back ached so much that I rocked side to side, trying to find some comfort.

I was admitted, and for weeks, I had hundreds of tests/re-tests, drank nasty concoctions, got stuck (with needles) until my arms had tracks and had tons of x-rays. I had a muscle biopsy on my leg, much to my dear brother’s dismay, as they thought I had muscular dystrophy; a liver biopsy was next.

A psychiatrist was sent to my room and, with no compassion, demanded I sit up in the bed. He said I was feigning my illness. One day, against the rules, I walked by myself to the bathroom as my mother cat napped in a chair by the window. The next thing I remember was waking up with people hovering over me and shards of glass from a vase of flowers embedded in my scalp. It was my electrolytes.

Eventually, one of the tests Baylor had run over and over again came back “positive”: I had acute intermittent porphyria (AIP). I remember being told to just avoid things - drugs, pregnancy, hormones and alcohol.

They stopped giving me barbiturates and other medications, which were exacerbating the disease; the hospital kitchen staff came up with something that I would eat: chocolate “malts” with raw egg in it!

I was weak, depressed, and I slept 18 hours a day. I was discharged home, spending most of the next two years sleeping. I was given Stelazine, an anti-psychotic drug, to “perk me up,” and, not fully understanding in 1969 the ramifications of having porphyria, I set up house in someone’s body, Elavil, an antidepressant.

I hated these drugs. I felt like a zombie. So one morning, I decided to stop taking them.

I asked my mother to drive me to apply for a job with a prominent allergist. My hands shook as I filled out the application, but weeks later, he hired me! That made a big impression, as later I attended nursing school and then graduate school in social work.

I married, at age 20. The stormy marriage didn’t last, but my strong desire to be a mother did. I adopted my daughter 23 years ago! I simply cannot imagine my life without her. I have been mostly well over the years.

Carbohydrates became my best friend, and avoidance was my other best friend. I became very cautious of almost all medications, stayed clear of chemicals (pesticides, hair sprays, perfumes, etc.), never again drank alcohol or ate food that contained it, and tried to avoid secondhand smoke at all costs, irritating a few folks along the way.

I know how lucky I have been. I don’t take this for granted. So many porphyria patients struggle and suffer from immense pain from this complicated illness – daily! This is not at all lost on me.

I remember in the late 80′s, feeling so honored the first time I met another person with porphyria, like I was in the presence of royalty! It felt so amazing to speak with someone who knew what it felt like to live with a disease people couldn’t pronounce!

I’d give a nickel for every time someone, looking quite puzzled, has asked me, “You have…porphyria??”

 

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  1. darshika says:

    my boyfriend have AIP, can i continue a family life with him happy?

  2. pop says:

    hi ,
    well i hv read b4 about this sickness.i always say ..its very hard to memorize this beside its rare disease ,but when i read from here i think its hard to live with this ….thanks 4 sharing
    can u tell us more about the skin and neuro signs , thank you all

  3. hi there! I have variegate porphyria, and well- it’s a constant adventure. I have an acute case, and now as a woman who’s 29 years old, I’m in that prime zone for plenty of attacks and problems. It seems to be an on-going battle.

    I’ve once talked on the phone with someone outside of my family who has porphria, but aside from blood relatives – I don’t really know anyone else with the disease. My Mom has AIP, and her mom have VP. One of my aunts is photosensitive with skin issues, I have an Uncle with AIP who has GI problems, and my Mom’s seems to be neurological. I have a grab bag, dealing with cysts all over the place, GI problems (I was misdiagnosed with Crohn’s Disease for years), and neuro issues galore (I was almost Dx’ed with MS at one point, sheesh).

    So… like you, it’s all about avoidance and knowing my triggers and staying away. About a month ago I drank some booze at a Xmas Party, and I’ve been paying the price ever since. I managed to get through Christmas Day and New Years without touching a drop, and I’m really happy about that. Well, I’m happy because I know how sick I could have become… but as someone who’s rather be the life of the party instead of sitting on the sidelines, it’s a bummer.

    Anyways – thanks for posting about porphyria. It’s awesome to see anyone else online talking about it.

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