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Herta Abarr

I am so blessed! I am 60-years old and diagnosed with AIP. The diagnosis is recent, (Oct. 2004), after we moved to North Carolina, and years of begging the doctors in Illinois to conduct the tests. Fortunately, I made a chance remark in an email about painful episodes to a cousin in Austria.

I was born in Berlin, Germany in Jan. 1945, and my father's family comes from an area east of Belgrade, Yugoslavia, a tiny Germanic Village settled in the late 1700's, but I grew up in Canada and in the US. Thus, this was our first real correspondence as the internet finally connected us. It seemed that we had led parallel lives of pain and suffering and had what she called the "Schwarz" stomach, as it had been named, by the people I had never known.

My grandmother had her first child in 1896 and gave birth 12 more times. Only 6 lived to adulthood, one died at 19, and another died at 30, post partum. Of the surviving children, all shared various forms of the same episodes of pain and illensses.

When I was young, I often vomited after meals. The doctors told my parents to spank me, as I was just vying for attention, but the vomiting did not stop. They finally stopped the spankings. I had massive immunizations in post war Berlin, Scarlet Fever in hospital for 6 weeks, with dunkings in chemical brews and multiple injections every day, so by age 10, I weighed 39 pounds. Many a night I spent with a hot water bottle on my tummy to relieve the pain, and even the smell of cooking nauseated me. At 16 I had a pain that lasted all day that during the night was so excruciating a Dr. was called. He said I was ovulating the first time. I had a second epsisode after the birth of my son a year later and had an exploratory laproscopy for the unbelievable sharp pain that would hit me. I recall having the baby in my arms and dropping to the floor in pain and holding him and laying him on the floor and then I completely collapsed.

I had major difficulty in recovering from the anesthesia and from then on had problems breathing in higher altitudes (I had been a pilot) and then finally had my first asthma attack on a commercial flight, and now I have chemical asthma and cannot tolerate smells, some chemicals, perfumes, cleaners, and even certain stores.

I finally went to a health food store, got a book on hypoglycemia that had a complex high carbohydrated diet in it, and utilized B-complex and supplementations and after 6 months, regained my health. Then, as I went into early perimenopause, the nausea returned, and I became depressed. Tthe depression was so pervasive and cyclical, I had myself hospitalized so that tests could be run, because in between periods I was just fine. The doctors couldn't find anything (surprise) wrong physically and put me on lithium. They determined I was not bi-polar, but just didn't know which medication to use that was as cyclical as my periods. Next, a gynecologist, ran some tests, and I had almost no progesterone and high estrogen, so I was given progesterone suppositories and became sick again.

This is when my cousin and I met on the internet for the first time and she told me that she had been diagnosed with porphyria in Switzerland 20 years ago. Finally, I had a name for my disease. Then I went on the Atkins diet, because my weight had soared to 140 (I'm 5' 2") and with the high cholesterol, in spite of power walking 4 miles/daily, doing all the gardening, and being in a golf league. I ate protein for the first time in my life, the weight melted off, and the cholesterol went down to 264 and when I achieved the weight goal, 124, I eased off. Last June we retired and moved to N.C., and now in the middle of moving, I was on a junk diet...and the sweats that had been minimal, after their initial torrent in menopause, drenched me every night, and I lost muscle strength. I was hospitalized with nausea, etc., trouble breathing, fever...and unable to eat in, and finally a doctor ran the 24 hour test for AIP and I was positive.

We joined The APF foundation recently and today Desiree’s book arrived. I saw the call for enzyme replacement research, so I thought I would inquire and see what a dominant gene this is in my family. I've only met a few, and find that our parrallel histories are one for the books.