Walking for a cause

On a hot and stressful day in 1994 Atlanta resident Carla Jenkins started to feel extremely tired and noticed that the muscles from her waist up were weak and not responding. Her condition reached a point where she couldn’t hold her head up, speak, eat or swallow.

“I got into an intensive care unit with a bad crisis. They didn’t know what happened. I was going from one doctor to the other. When I got better I started reading in a medical book about myasthenia gravis [MG] and I realized my symptoms matched so I basically diagnosed myself. The second neurologist that I visited confirmed that I had that disease,” Jenkins said.

Myasthenia gravis is caused by a breakdown in the normal communication between nerves and muscles. There is no cure for it, but treatment can help relieve symptoms, such as weakness of arm or leg muscles, double vision, drooping eyelids, and difficulties with speech, chewing, swallowing and breathing.

“MG is an autoimmune condition in which the immune system attacks the neuromuscular junction–the space where the nerve meets the muscle–it’s a relatively unknown condition. Particularly among lay people,” said Gavin Brown, a neurologist at Emory University Hospital.

On March 15 the Myasthenia Gravis Foundation (MGFA) will celebrate its third annual walk in Atlanta to raise awareness and funds to support the organization.

“Whenever I mention that I have this disease, people say they have never heard of it. It’s a rare disease so the walk is a great opportunity to raise awareness. We want to find the cure for it,” said Jenkins, who will be the Georgia walk hero and speak at the opening ceremony.

“When you have any disease it’s good to know that you are not alone, that’s why I want to share my story,” she added.

According to Brown, the cause of MG is not known. A genetic predisposition to autoimmune diseases can run in families, but MG is not thought to be directly hereditary.

“It affects more women and they are affected more severely and younger than men. The most common age at onset is the second and third decades in women and the seventh and eighth decades in men,” said the neurologist.

Approximately 20 out of 100,000 individuals in the United States have been diagnosed with MG, according to the Myasthenia Gravis Foundation of America, but because MG is considered under diagnosed, the prevalence is thought to be much higher.

For DeKalb resident Reba Herzfeld, who was diagnosed with ocular myasthenia gravis in 2004–a form of MG in which the muscles that move the eyes and control the eyelids are easily fatigued and weakened, the MG walk renews hope, and creates a community of support and strength.

“It enables patients like me to talk about our illness and experience an outpouring of support, concern and a pledge from family and friends to do more,” she said.

Herzfeld had several surgeries in the last 10 years but she was told that she can’t have more surgery because she would not be able to close her eyelids.

“At 8 o’clock in the morning my eyes are open; at 5 in the afternoon they are half closed because they droop. I can see fine because my eyelids don’t cover the pupil but it gets worst as the day goes on if my eyes get very tired,” said the Dunwoody resident, who has two daughters, 34 and 37, not affected with the disease.

“It is a debilitating disease, with no mercy. Just like octopus tentacles, MG does not give you warning on which part of your body it will wrap, sometimes suffocating your very being,” said Juana Alzaga, a Toco Hills resident diagnosed with MG two years ago.

For Brown, events such as the walk represent hope in terms of finding the cure because they will help raise money and generate interest to encourage the pharmaceutical industry to move forward toward a cure.

“The drugs companies won’t provide funding for research for rare diseases because it is not profitable and that’s frustrating for me as a doctor because I don’t care if it’s profitable I just want to help the patients,” concluded Brown.