porphyria?

[freebrew]

7. My daughter has Acute Intermittent Porphyria.

Had stomach pains for a year, then a scope. The drugs used during the scope made things worse.
Her form of the disease, and mine, isn't a skin problem, it affects the nerves.

The doctors here wouldn't believe her when she complained, they couldn't find anything wrong. Accused her of being bulimic. She was 5'3" and 130 lbs.
She had a massive seizure, so they took her gall bladder out, more drugs and anesthesia causing worse problems.

We took her to a children's hospital, and after fighting the doctors and insurance companies, got to the bottom of it. A genetic test confirmed it. She had several doses of panhematin and is OK now. But a tragic 7 months.