Monday, May 24, 2004
Rose Mary Reiz
The Flint Journal
When Diana Hohn was diagnosed with multiple sclerosis in 1975, she happened to flip through an old encyclopedia to learn more about the disease.
"It basically said I would be dead in five years," said Hohn, 52, a research advocate for the National MS Society's Greater Flint Service Council.
"It didn't help that the only other person I knew who had the disease had just died. I kind of sat around and cried for two years."
No wonder. Outdated information about MS, an autoimmune disease that affects the central nervous system, paints a grim picture.
"If you pick up a book from the 1970s, you're going to read horrible, horrible things about MS," said Hohn of Flint Township. "Actually, any outdated information will sound like doom and gloom."
For MS patients, "old news" means anything printed before the mid-1990s, when giant strides in research and treatment were made.
Because outdated information can be worse than none at all, Hohn and MS Society volunteers are this month delivering new books about MS to area libraries and asking that old books about the disease be discarded.
The Flint Service Council Library Project received $500 from the National MS Society and matching funds from Demos Medical Publishing to purchase more than two dozen new books for libraries in Genesee, Tuscola and Lapeer counties.
Hohn said that local librarians have been receptive to and grateful for the new books, which cover topics ranging from MS diagnosis, symptoms, treatment, employment issues, legal rights and caregiving.
Once the books are delivered and shelved, newly diagnosed patients who go to the library to learn about MS will get new ?and often encouraging ?information, she added.
While MS remains incurable, five FDA-approved medications have been successful in slowing the progression of the disease in many patients. Symptom management also has improved.
"It's not a death sentence," Hohn said of MS. "People are being diagnosed sooner, and they're taking medications, which work immediately to minimize the affects of the disease."
More is also understood about the benefits of exercise, positive attitudes, stress reduction and other healthy lifestyle changes in MS patients, she added.
Hohn should know. Thirty years after she read about her imminent death, she is alive, kicking and helping other patients keep up with the changing times.
"The news about MS is getting better all the time," she said. "The important
thing is making sure people hear about it."
Copyright © 2004, The Flint Journal