Hope for young MS victims
Published: January 23, 2006
Four doctors examined Melissa Harris before she got the correct diagnosis for her double vision: pediatric multiple sclerosis.
That was two years ago. After many visits to the University at Buffalo’s Jacobs Neurological Institute, in Buffalo General Hospital, and treatment that included chemotherapy and now a disease-modifying drug called Rebif, the Fredonia 15-year-old is holding her own.
“My balance is a little off, but not by much,” she said.
A $1.8 million grant announced Thursday will give Melissa and kids like her improved access to the latest research and remedies. UB will use the money from the National Neurological Multiple Sclerosis Society to establish the Pediatric Multiple Sclerosis Center of Excellence at Women and Children’s Hospital.
It will be one of six comprehensive pediatric MS centers nationwide.
A progressive disease of the central nervous system, multiple sclerosis is commonly perceived as an illness affecting young to middle-aged adults. But improved diagnostic tools have revealed that 8,000 to 10,000 American children under 18 have it, and as many as 15,000 more may have symptoms.
This is of particular concern in Western New York, which has the nation’s second-highest incidence of adult MS: 160 cases per 100,000 population versus 50 cases per 100,000 nationwide.
Area children presumably are affected at roughly the same rate as adults, though there is not enough data to confirm that suspicion, said Melissa’s specialist, Dr. Bianca Weinstock-Guttman, director of the Jacobs Institute’s Baird MS Center. Weinstock-Guttman also will direct the new Pediatric MS Center.
Until about 50 years ago, children with MS were usually diagnosed with some other neurological illness. “It was typically under the pediatrician’s radar screen,” said Deborah Hertz of the local MS Society chapter.
The Women and Children’s clinic will help UB investigators expand the knowledge base and better diagnose and treat children with the disease.
The program will build on the legacy of Dr. Lawrence Jacobs, the late UB researcher and clinician who pioneered treatments that dramatically improved the lives of adults with MS, said Dr. David L. Dunn, UB vice president for health sciences.
“Now UB will be able to do the same for children,” he said.
The center will treat children who have MS and other demyelinating diseases of the central nervous system. Physical therapy and rehabilitation services will be included. The program will also educate primary care physicians and families of patients about symptoms and treatment options, and seek to advance clinical and basic research on the diseases.
Other regional pediatric MS centers are at Children’s Hospital of Alabama in Birmingham, Stony Brook University Hospital, the Mayo Clinic in Rochester, Minn., Massachusetts General Hospital in Boston and the University of California in San Francisco.
When Melissa was diagnosed at 13, her parents, Linda and Scott Harris, were stunned. There is no cure for MS.
But since the Fredonia Central High School sophomore began injecting herself with Rebif, one of a group of drugs called beta-interferons, her symptoms have not worsened. “She’s doing wonderfully,” her mother said. “She’s a trouper.”
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