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Children with MS face uncertainty

`Will people think of me as a different person when they find out I have a disease?' one teenage girl asks.

December 31, 2006|Judith Graham | Chicago Tribune

CHICAGO — Tiffany Jones trembled as she stood before her classmates at Hillcrest High School. It was time to present her anatomy project -- and reveal a closely guarded secret.

Eyes downcast, Jones described a high school senior with multiple sclerosis, a degenerative illness of the nervous system. "Numbness, tingling, poor balance, muscle weakness, bladder [problems] and forgetfulness" are among the girl's symptoms, she explained.

The 18-year-old "tries to stay positive because she has a lot of support from her family, friends and her church," Jones continued, her voice cracking. "[But] it makes her feel less of a person at times because she is living with a disease that she can't do anything about. Her name is -- Tiffany Jones."

Jones paused, trying to keep her composure, as her classmates stared, some with their mouths open.

"There have been many nights that I sit up and cry just thinking about how I will live the rest of my life with this disease. I often wonder if I will be able to do the things I want in life," she said. "Will people think of me as a different person when they find out I have a disease or will they think of me as just being Tiffany?"

Until recently, multiple sclerosis was considered an adult illness. The medical community mostly overlooked children with MS-type symptoms.

But now, youngsters with MS are getting more attention as researchers search for the origins of this incurable, chronic illness that strips nerves of their protective myelin coating and interferes with the brain's functioning, leading to the kind of problems Jones described to her classmates.

As many as 10,000 U.S. children and teenagers -- some as young as 5 -- have MS; another 10,000 to 15,000 kids have symptoms but can't be diagnosed with certainty, according to the National Multiple Sclerosis Society.

The youngest known patient diagnosed with MS was 18 months old, but more commonly the disease surfaces after puberty when teenagers' bodies are being flooded by hormones.

Resources are scarce for these patients. With few exceptions, support groups are designed for adults. There are no medical guidelines for treating MS in children. None of the drugs used for adult MS patients have been tested extensively in school-age youngsters or teens. And even now, pediatricians and family doctors often assume children can't get the disease, making misdiagnoses routine.

"Neurologists know about this disease, but they're reluctant to treat children and adolescents because there are so many issues -- dealing with school, with development, with behavioral issues, with the family," said Dr. Lauren B. Krupp, a neurologist who directs the National Pediatric MS Center at Stony Brook University Hospital in New York.

"And pediatricians know how to treat kids but they don't understand MS or know anything about the medications."

Disease differs

Adding to the confusion, MS in youngsters is, in many ways, different from the disease in adults -- so much so that researchers aren't certain if it is the same illness or a variant.

For instance, in adults, MS overwhelmingly afflicts white people, but at younger ages far more African Americans, Asians and Latinos are affected, according to Dr. John Richert, executive vice president of research and clinical programs at the National MS Society.

The disease also appears to progress more slowly in children, and "when we look at imaging studies of the brain, they look different in children with MS than adults," said Dr. Nancy L. Kuntz, a pediatric MS specialist at the Mayo Clinic in Rochester, Minn.

That may be because young people's brains are still developing, suggested Dr. Tanuja Chitnis, director of a pediatric MS center at Boston's Massachusetts General Hospital, noting that young people with MS appear to have more problems with processing language and visual/spacial perception.

Perhaps most puzzling is the relationship between MS and a separate condition known as acute disseminated encephalomyelitis, which children get more often than adults. ADEM, as it's known, is an abnormal immune system response to a viral illness that typically lasts a few days or weeks but sometimes can recur.

"Often, it's hard to sort through what constitutes a bout of ADEM and what is an initial episode of multiple sclerosis in a child," said Dr. Joy A. Derwenskus, an assistant professor of neurology at Northwestern University's Feinberg School of Medicine. The distinction is important because treatments for the conditions differ.

Understanding the link between viruses and MS is one of the main goals of a new network of six pediatric MS centers established by the National MS Society late last year. Studying the origins of the disease in young people should be easier than investigating adults because kids have been exposed to fewer viruses or environmental agents, Richert said.

Improving clinical care and support services for young people is another objective for the centers, whose Midwest location is the Mayo Clinic in Rochester, Minn.

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