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For kids, MS itself just half the battle | Chicago Tribune

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

"The biggest single problem these kids have is they don't know anyone else like them," said Maria Milazzo, a pediatric nurse practitioner at the Stony Brook MS center.

learning to adjust

Nicole Caron was so scared after being diagnosed with MS last year at 15 that she didn't tell any of her friends what was wrong--or even admit the truth of her illness to herself. A basketball and soccer player, Nicole first felt numbness in her fingers, then extreme fatigue. Within a few months, she began getting excruciating headaches, blurred vision and pain behind her left eye.

The final diagnosis came after a brain scan and a spinal tap, but relief at knowing what was wrong was quickly followed by fear and denial.

"I didn't want to believe anything was wrong," said Nicole, who lives in North Attleboro, Mass., and is being treated at Massachusetts General Hospital. "I thought if I kept it to myself it would be all right. And I knew everyone at school would gossip, and I didn't to be the center of attention."

But the more Nicole concealed her worries, the lonelier she became. "I felt like a bad person because I wasn't telling anyone the truth," she said. After a month, she began letting friends know what was going on, but none of them had ever heard of MS.

Twice a week, Nicole left school for doctors' appointments; once, a teacher commented in class on her excused absences. "I started to cry, I was so upset," said Nicole, who gives herself daily injections of the drug Copaxone to help stall the progress of MS. Several weeks later, she disclosed her illness to the teacher.

For her mother, Judy Caron, the hardest part is accepting the unpredictability of MS, with symptoms that can come and go without warning.

"As a parent, you always try to fix everything for your children, but with this disease you have absolutely no control," she said.

In south suburban Country Club Hills, Carol Jones--Tiffany's mom--repeats a similar lament: "What's so scary about MS is, you can't tell what the future holds. You just don't know day to day what tomorrow is going to be."



Coping, with help

Tiffany's symptoms first surfaced in July 2005; after multiple visits with doctors and medical tests, a definitive diagnosis came a year later. In between, this slim dancer and pompom squad member with big, dark eyes couldn't understand why her arms and legs were going numb or why she suddenly would stumble or drop a cup.

"It makes you feel so uncertain and so afraid," said the soft-spoken girl, who started thrice weekly injections of the drug Rebif in November.

For support, Tiffany and her mom turned to a group of adults with MS who meet monthly in nearby Crete.

"It's really helpful to know what other people go through," but many of the group members are in wheelchairs and "I was thinking one day that could be me," she said.

At school, Tiffany told a few close friends about her illness early this fall but kept it concealed from other classmates and her teachers. She felt conflicted. She wanted people at school to know how her life had changed, but she didn't want to tell them.

Then, an assignment for her anatomy class became an inspiration to come forward. The teacher, by coincidence, had asked her to write a report on multiple sclerosis.

Standing before her classmates, Tiffany spoke of her fear, her faith and her confusion about what it means to stand on the edge of adulthood, trying to accept a lifelong illness.

"At times, I still feel like MS is taking over my life. I'm still struggling with that," she said. But "I have to tell myself to stop wondering what will become of me. I know that no matter what, I won't give up."