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Ioma's LiveJournal

15 February 1984
External Services:
  • ioma@livejournal.com
I’m Ioma and I’m a 24-year-old woman with multiple disabilities and chronic illnesses.

I live with a genetic connective tissue disorder called Ehlers-Danlos syndrome (EDS), which causes me to have chronic pain, daily joint dislocations, the need for reconstructive orthopedic surgeries, and lots of secondary health problems. Nobody else in my family has EDS - I have what is referred to as a “spontaneous mutation” type of EDS.

In addition, I was born completely blind. I have a severely underdeveloped right eye, which I cover with a prosthesis and have no sight in. The cornea of my left eye was covered with scar tissue when I was born, and I received a corneal transplant when I was 5 weeks old, which has given me some very limited sight in my left eye.

I have many “secondary” medical conditions as well, including severe sensory integration dysfunction, which is considered to be in the autism spectrum, but still “functional”; dysautonomia, a dysfunction of the autonomic nervous system, which can cause fainting, arrhythmia, difficulty regulating body temperature, heat or cold intolerance, palpitations, dizziness, nausea and vomiting; intermittent gastroparesis, which may be caused by the dysautonomia; severe endometriosis with complete hysterectomy; chronic fatigue, most likely caused by having to deal with chronic pain; miscellaneous neurological problems; and a tendency towards infections.

Most, if not all, of these conditions were caused by multiple exposures to a pesticide called Dursban while I was still in the womb. Dursban is classified as a neurotoxin and was originally intended for use in chemical warfare, but was used instead beginning in the 1960s to kill bugs. Tests done in 1990 showed that a one-time exposure could be lethal. My mother was exposed 24 times while pregnant with me, and was lied to and told it was completely harmless. As of 2003, it is illegal to possess Dursban in the United States.

When I'm not busy dealing with medical nonsense, I love to listen to music, read, draw, write, play basketball, go on the swings at the playground nearby, swim, design websites and make graphics, snuggle with my kitty cat named Dave, and hang out with my family and friends.

I love anything having to do with cats, techno music, horror movies, various oddities, funny TV shows, gummy candy, chocolate, medical dramas, '80s music, lots of glorious sleep, things that light up, and all things colorful. :)

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