Area residents walk to raise awareness about Myasthenia GravisBy Yasmine Regester / April 14, 2017
Some days it’s hard for Tamieka Cole to get up and move around. Today wasn’t one of those days.
Cole was diagnosed with a rare nerve condition seven years ago called Myasthenia Gravis that causes extreme muscle fatigue. But on Saturday, Cole joined other patients and their supporters in a walk to raise money for treatment of the illness and for research.
“Today is a better day. Some days are harder,” said Cole. “Having this disease is indescribable. Because so little is known about the disease, it’s hard to know what to expect every day.”
More than 150 people gathered at Barber Park in Greensboro on April 8 for the annual one mile MG Walk, sponsored by the Myasthenia Gravis Foundation of America. Since its inception in 2011, the MG Walk has raised $4 million to help fund research, treatment, programs, services, education and advocacy efforts.
Myasthenia Gravis, or MG, is a chronic autoimmune neuromuscular disorder that is characterized by fluctuating weakness of the voluntary muscle groups. Common symptoms include drooping eyelids, blurred or double vision, slurred speech, difficulty chewing and swallowing, weakness in the arms and legs, chronic muscle fatigue and difficulty breathing.
MG can occur in all races, genders, and at any age. According to the Myasthenia Gravis Foundation of America (MGFA), each occurrence of MG is different, so patients often experience their own combination of symptoms, some more severe than others.
Former District 8 Guilford County Commissioner Ray Trapp noted that he and his wife noticed a droopy eyelid in their five-year-old daughter, Alex, more than a year and half ago.
“I didn’t think it was a nerve condition. I attributed it to allergies,” said Trapp, who went on to say that her pediatrician recommended they see an optometrist. When her eyesight seemed to be fine, they were referred to a neurologist, where Alex underwent various blood tests to check for the presence of antibodies to the disease.
The MG Foundation of America estimates that the prevalence of the disease is about 20 per 100,000 population. MG is still a rare nerve disease that can take up to two years to diagnose. While there are treatments, there is currently no cure for MG. Available treatments include medication, surgical removal of the thymus gland, or plasma exchange to remove antibodies from the blood.
Luckily Alex has responded well to medicinal treatments. Trapp says his daughter has been symptom free for the last year so her doctor is working on slowly scaling back the medicine until she is off of it completely.
“Keep an eye on yourself and loved ones for those signs. It’s mostly diagnosed in middle age adults, but I want everyone to be aware and keep this on your radar if you’re having those symptoms,” said Trapp.
MG Walk participant, Joey Whitt was diagnosed just seven months ago, late into his 50s.
“I had never heard of MG before and it’s still new to me, but there’s a good support group and resources. No one has the same symptoms but I’m lucky to have the support of my family,” said Whitt who traveled from Roxboro to Greensboro to participate in the walk.
“Today I’m feeling pretty good. I wasn’t going to miss the walk,” Whitt added.
While it can be hard dealing with a disease that not many people know about, there is a local support group that rallies behind MG patients.
Vicki Ruddy, facilitator of the Triad MG Support Group out of Winston-Salem, said the support group helps people learn about the disease and meet others who know exactly what they are going through.
“It’s very powerful for someone with MG to meet someone else with MG,” said Ruddy, who was diagnosed with the disease 18 years ago. “But together we are stronger and on our way to creating a world without MG.”
For more information on Myasthenia Gravis, visit www.myasthenia.org.