Polycontritis awareness

Saturday, March 31st 2001, 12:00 am
By: News On 6

If you've ever felt like a foreigner in the land of computers, you're not alone. A Broken Arrow woman didn't know anything about them, until the day she got some bad news. Now she's using her knowledge to help bring together victims of a rare disease.

KOTV's Jenny McNeill says Heidi Main has mail and lots of it, she has more email than she can read, sometimes up to 200 messages a day. Pretty good for someone who's only been computer literate for a couple of years. Her inspiration to learn sits above her computer. That's Don, her 65-year-old husband. His rare illness forced her out of her computerphobia. "For 2 year prior to diagnosis he had swollen purple ears. It got so bad he couldn't put on a T-shirt, couldn't lay on either one of his sides because all of this was swollen and purple and nobody could figure it out." But one doctor finally did and the prognosis wasn't good.

Heidi Mann says "when Don came home it was a Friday night it was relapsing polycontridis and there was no cure for it and I lost it." It's a disease that eats away at a person's cartilage. Doctors at the Mayo Clinic in Rochester, Minnesota confirmed the diagnosis and gave the Main's a better prognosis. Armed with new information, Heidi Main logged on. " Had to rely on Don, my grandkids and my son-in-law because I just don't know much about computers." Since then, she's learned a lot, joined a support group, and helped start a foundation devoted to providing information and support for patients around the world. She communicates with members daily.

Patients can live a fairly normal life with medication. Don Main says he's one of the lucky ones and doesn't show many signs of the disease. He says his wife's research has helped. "I'd probably be in a whole lot worse shape than I am." His wife says she had no choice. "I had to find out how I an help him because to me he's my world and I had to learn how to take care of it." Main is hosting the members of the Relapsing Polycontritis Awareness Foundation this September here in Tulsa.

If you'd like more information you can call 455-1040.