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Family raising awareness of rare disease

By JILL MOON
The Telegraph

WOOD RIVER - Grandparents George and Paula Smith are traveling across the state to help raise awareness and research money for a disease they had never heard of before it afflicted their granddaughter.

Lyndsie Smith, 18, of St. Charles, Mo., was diagnosed with juvenile dermatomyositis last August. She, her parents, Jo Ellen and Mike, and both sets of her grandparents are working as volunteers for the LaSalle Bank Chicago Marathon to be run Oct. 22. Her other grandparents are Dick and Ann Royer of Farmington, Mo. The marathon will raise funds for research to find a cure for juvenile myositis or JM.

Lyndsie's diagnosis came as a shock to her family. George and Paula Smith of Wood River still have a hard time talking about the diagnosis.

"It's terrible," Paula said, her voice trembling. "She's such a good girl."

JM is an auto-immune disorder that affects about 5,000 children and teenagers nationwide. This family of rare and debilitating diseases can cause muscle weakness and pain, extreme fatigue, digestive difficulties, lung and heart problems and painful calcium deposits under the skin, among
other side effects.

"What really got us is nobody ever heard of this," George Smith said about the disease that is often hereditary.

Doctors told Lyndsie the cause is usually hereditary, but no one in her family has JM or anything like it, Lyndsie said. Her symptoms began last year after she came home from a float trip. Her eyes were swollen and everyone thought she had poison ivy or allergies, Lyndsie said. Her mother spent the entire summer searching for causes of Lyndsie's symptoms.

"My mom realized I kept getting worse and doctors kept coming up with different things. She just got tired of it," said Lyndsie, a freshman in the nursing program at Mineral Area College in Park Hills, Mo.

Besides allergies, a doctor thought it could be mononucleosis. Lyndsie's other symptoms included extreme fatigue and weakness that prevented her from doing everyday things like brushing her hair or walking up stairs.

After so many false diagnoses, Lyndsie's mother simply took her to the emergency room at Children's Hospital in St. Louis.

"They thought it was an auto-immune disease but had to find out which one," Lyndsie said. "They could tell because I couldn't lift my leg against gravity and I had these bumps on my fingers."

The bumps were a common, telltale sign of the disease, Lyndsie said. In less than a week after tests and going to a rheumatologist, Lyndsie received the diagnosis. She underwent rigorous treatment but has come quite a ways since then, she said.

Lyndsie entered college as a second-semester freshman because she already completed 20 hours of college credit at Orchard Farm High School.

"It's pretty good and not much different than high school so far," she said about college. "Right now I think I want to be a nurse practitioner for pediatric rheumatology for juvenile arthritis, and what I have."

Lyndsie takes 13 hours of credit this semester and has a short day on Thursdays to accommodate monthly visits to Children's Hospital. Every four weeks she receives an IV-type treatment that takes up to seven hours to administer. She also self-injects medication once a week and takes some oral medication. When she was initially admitted to the hospital as an inpatient, the treatment took 36 hours to administer. Then it went to 12 hours before she was qualified for outpatient treatments. Her current regimen started last October.

"I can tell that it's helping. It's just really slow progress," Lyndsie said. "As it gets closer to time to go back for my treatment, I can tell I'm weak and sore. Other than that, I feel fine - just not where I want to be. Treatment is like a boost of energy for a couple weeks."

Also after the initial diagnosis, Lyndsie went to physical therapy for simple workouts but now she is able to do that at school.

"There is a really good workout center and I'm taking it as a class," said Lyndsie, who is also in the process of filling out her nursing application.

To learn more about JM, to volunteer or to make a tax-deductible donation, please visit www.curejm.com or call Tom Hume at (760) 487-1079.