When Sharon Walk of Florham Park NJ was 15, she began to fall asleep in school. It was the first of many symptoms of Chronic Fatigue Syndrome, a severely debilitating disease. She soon found herself unable to participate in many of the activities teenagers take for granted; playing sports, going to dances—even talking with friends exhausted her.

Sharon was experiencing pain as well as fatigue, but the most difficult thing was the lack of understanding she encountered from others. Her symptoms were dismissed by doctors who told her that her illness was psychological, not physical. Even after she was diagnosed with CFS, her school refused to recognize it as a legitimate illness. School officials recommended psychiatric treatment, and Sharon complied, to no avail.

Rather than dwelling on the difficulties of her life, Sharon decided to use her experience to help others. She founded a support network called CFS Youth Outreach, which helps kids with CFS get the support they need.

The group has more than 100 members who range in age from 6 to 25. Many of them have lost touch with the outside world as a result of the illness. Sharon’s pen pal network and quarterly newsletter help her readers know that they aren’t alone. Sharon talks to kids with CFS on the phone, offering advice on anything from finding a good doctor to making friends. She was warned that her own health was threatened by these activities, but she insisted on continuing.

Said one 19 year-old CFS sufferer, “Sharon has fulfilled her ideal, forming a community of once-isolated individuals. Instead of those kids living alone in their own cold, isolated world, left without support or understanding, they now live in a community of hope, love, understanding, comfort, and companionship. The example and support Sharon provides empowers other kids to take a positive step in coping with their illness and want to maintain a positive outlook on life. They begin to want to reach out to others.”

Sharon Walk is almost completely bedridden, and even a small exertion can set her back for months. Nevertheless, she spends the strength she has on supporting her community of young people with CFS, saying, “I don’t want other kids to feel that they’re alone in facing this.”

Update: Sharon Walk died in 2012. She left behind this advice to physicians dealing with young chronic-fatigue patients: http://solvecfs.org/mecfs-resources/patient-resources/youth/cfs-in-youth/