Carol Lynn, right, and Donna Kalisek talk April 19 about what it's like to live with myasthenia gravis, an autoimmune neuromuscular disorder that affects the nervous system's ability to control the voluntary muscles in the body, at Kalisek's mother's home in Middlesex Township. Lynn and Kalisek now work with the Myasthenia Gravis Association — Lynn is on the board of directors, and Kalisek is an administrative coordinator — to help others cope with the debilitating, uncurable disease.

As a teenager, Carol Lynn was ready to grasp the world in her hands. Lynn was a college student and promising athlete with Olympic aspirations.

But that all slipped away when a mysterious illness began to grip her life. At 18, she was told by doctors she wouldn't live to see 21.

Now 73, Lynn is one of the longest surviving victims of myasthenia gravis, an autoimmune disorder that can affect nearly every muscle in the body. As an ordained minister, she serves on the board of directors of the Myasthenia Gravis Association of Western Pennsylvania, an organization her father helped to found when she was diagnosed 57 years ago.

"I went though a lot of things, a lot of trauma," said Lynn, of Hampton Township, Allegheny County. "I would like to spare other people. I had to drop out of college to which I had a scholarship. I had a summer job as a day camp counselor, and I had to give it up. I had been an athlete training for the Olympics, and now I couldn't walk and talk. I'd like to spare others that horror, because that's what it was."

Her condition deteriorated for two years, and she was near death before she was finally diagnosed. With the proper diagnosis and medication, she was able to survive. And although she still struggles with the incurable disorder, she holds out her story as a lifeline to others.

"When I say I've had myasthenia for 57 years, for a new person just diagnosed who has been struggling for two or three months, that's a ray of hope," she said. "I'm married. I have two sons. I went to college and seminary, and I am ordained. You always have to be resilient to the difficulties."

Myasthenia gravis is an autoimmune neuromuscular disorder that affects the nervous system's ability to control the voluntary muscles in the body. There is no known cause and no cure. It affects women and men, regardless of race. The thymus gland is thought to play a role in the development of the disease, but so far, the medical community has "been very unable to put their finger on an exact cause," Lynn noted.

Even though a definitive cure remains elusive, treatment has advanced, and today, the condition can be managed and even improved substantially with medication and various procedures, including surgery to remove the thymus. The symptoms, such as fatigue and muscle weakness, develop gradually and can often be mistaken for other illnesses.

Typically, patients will notice droopy eyelids or weak facial muscles. Double vision also is common. Patients might experience muscle weakness that comes and goes with repeated use. Severe cases can affect the muscles that control breathing, leading to respiratory distress.

"Myasthenia frequently masquerades as an emotional problem," said Lynn, noting symptoms can fluctuate from mild to severe on a daily basis.

"It is a disorder of the chemical balance between every nerve and muscle. There is a chemical that is released every time you have an impulse that goes to a muscle, and another chemical that stops that impulse. There is either not enough of the chemical to send the impulse, or not enough of the chemical to stop the impulse," she said. "That's why people will appear normal, then begin to walk and they walk so far and then struggle or can't walk at all. If they sit and rest, they can walk again."

Butler County native Donna Kalisek, now of Pittsburgh, was 8 when she was diagnosed with myasthenia gravis 40 years ago. She is now the administrative coordinator with the Myasthenia Gravis Association, which serves to promote awareness and assist patients in managing their conditions.

"They are catching it and diagnosing the illness much sooner," said the Mars High School alumna.

Formed in 1955, the association offers a variety of patient services from its location on the campus of Allegheny General Hospital in Pittsburgh. A registered nurse is available to counsel patients and help coordinate medical care. A social worker also is on staff to help patients negotiate the physical, emotional and social difficulties of a life-altering diagnosis.

"We have a treatment center that we do once a week," Kalisek said. "We have nearly 400 patients that we see. Really, we're an outreach that helps them with any problems they may have."

She said myasthenia gravis patients have special considerations for such routine tasks as going to the dentist or fighting off a cold. Many medications, even common over-the-counter products, need to be avoided or used cautiously, she said.

Kalisek said the organization also provides on-site seminars for medical professionals such as physical therapists and nursing home staff.

"You'd be surprised how few doctors know about myasthenia," she said.

The group's mailing list is about 4,000 people, but it gets telephone calls and e-mails from all over the world.

For a newly diagnosed patient, the association's network of support is invaluable.

"You feel like you're not alone with the illness," Kalisek said. "I was the only one in Butler County that I knew of when I was diagnosed. And I was so young. The school didn't know what to do with me, so I was out on my ear. I was tutored at home for three years before I could go back to the public school system," she said.

"Knowing that there are other people who are out there and are coping with it, it just gives you a brighter outlook," Kalisek said.

For more information on the Myasthenia Gravis Association of Western Pennsylvania, visit to www.mgawpa.org or call 412-566-1545.