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Written by Jamie Talan, Newsday Staff Writer
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Monday, 23 December 2002 |
When Vanessa Javor was 15, half her world went dark. First, vision in
her right eye blurred. Two days later, the vision in that eye was gone.
The blindness was temporary, and turned out to be a symptom of multiple
sclerosis, the autoimmune disorder that attacks the insulation of the
nerve fibers in the brain and spinal cord. Vanessa's vision returned,
but the diagnosis remains.
Multiple sclerosis is considered a rare diagnosis in childhood. But
doctors estimate that it may affect as many as 15,000 children and
teenagers. Their symptoms include, in addition to vision problems,
weakness so severe it threatens movement, abnormal sensations, numbness
and disorganized thinking.
To address the condition and help young people like Vanessa — now 17,
she has joined a mock trial group at her school, Newfield High in
Selden, and wants to be a lawyer — doctors at Stony Brook University
have opened the country's first pediatric multiple sclerosis center. So
far they have treated 25 patients and are expanding the center in hopes
of evaluating and treating more than 100 a year.
Dr. Lauren Krupp, director of the program, has spent recent years
educating her colleagues in neurology and pediatrics about the signs
and symptoms of multiple sclerosis. "We want to get the message out
that MS does exist in young people and that we can treat them early to
prevent relapses," she said.
Multiple sclerosis has been an elusive target for scientists. It comes
in two forms: one in which symptoms occur and then disappear, known as
remitting/relapsing; and another in which symptoms are more chronic and
progressive.
Scientists do know that in MS the body's immune system attacks the
myelin sheath of the nerve cell, its insulating component, . resulting
in a garbling of nerve cell signals. Symptoms differ from patient to
patient depending on where on the nerve the myelin sheath is damaged.
Patients' brains are marked by inflammatory scars, or lesions.
Scientists suspect the lesions may ultimately damage the nerves
themselves. Generally, when the lesions are present, so are the
symptoms.
A decade ago treatments didn't exist. But in recent years approaches
have been developed to reduce the size of the lesions and prevent new
ones from forming.
As a result, Krupp and her colleagues now are aiming for earlier
diagnosis in children, so treatment can be initiated. Early treatment,
they believe, means a better long-term prognosis.
The center has reached out to doctors all over the world, looking for
children with symptoms that may be going misdiagnosed. The youngest
they have seen is a 6-year-old with no family history of the disease.
Some children arrive laden with early misdiagnoses.
"It is a hard disease to identify if you don't know what to look for,"
said Krupp, a professor of neurology. "We need the right diagnosis as
early as possible. The sooner children begin treatment, the more likely
we are to slow the progression of the disease."
Until now, no study has included children with multiple sclerosis. The
center will maintain a registry of information from each patient, with
the aim of identifying different forms of disease progression and
treatment responses.
Dr. Anita Belman, a Stony Brook pediatric neurologist, said that before
medicines for MS became available, doctors were reluctant to give a
diagnosis. "Doctors felt a great psychological burden would be placed
on children with such a diagnosis," said Belman. Now that's changing.
Anthony Felice learned of his diagnosis on his 16th birthday. Three
weeks earlier, he had awakened numb from head to toe. He had been
trying out for a catcher's position on a team in his hometown, upstate
Endicott, and thought the numbness was caused by a fall or too much
practice.
On his birthday, he told his mother, Laura Kotsubka. By that afternoon,
a brain scan identified 14 lesions in his brain and spinal cord,
evidence of an acute MS episode.
Felice has the remitting/relapsing form, which is the more common
condition. In the two years since his diagnosis, he has experienced 11
more episodes, and vision problems have left him legally blind. He was
home-schooled during the year he was too weak to walk.
When he was referred to the Stony Brook center, his legs were like
lead. He had tried every medicine except one, the chemotherapy drug
Novantrone. It was approved for use in MS patients in 2000 after
studies convinced federal drug regulators that it worked to reduce MS
symptoms and prevent new episodes.
After his first infusion, the teenager climbed down from the examining
table, walked a few steps and was so excited that he jumped into the
air. He had two more, at three-month intervals. Now it's been a year
since the last infusion.
"He is quite an inspiration," said his mother, who was also diagnosed
with multiple sclerosis last year. Her son, now 19, can walk, but
remains legally blind and has lost the keenness of his memory. He
returns to Stony Brook several times a year for checkups and now
attends Broome Community College in Binghamton, hoping his studies take
him to the graduate level. He would like to teach history.
When Felice feels a negative mood coming on, he uses three words like a mantra: "Yes, I can."
Medical issues are only a one part of the Stony Brook center's program.
Individual and group therapy sessions are offered for the children's
emotional and social needs. And researchers are trying to assess memory
and thinking problems, which are common in adult forms of the disorder.
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