Living with multiple sclerosis has been a way of life for Laura Siegel for more than a decade. But it was only last month when Siegel decided she wanted to share her condition with others.
"I was hoping that I would meet other people with MS who were open and would want to get as much information as they could about the disease," said Siegel, who formed a Burke-area support group for others who have the neurological disease. The group, called the Burke Multiple Sclerosis Support Group, is a local branch of the Multiple Sclerosis Association of America (MSAA), and meets once a month at the Burke United Methodist Church.
At first, Siegel wasn’t looking to host her own group. She and her husband, who is also her caregiver, went to a similar support group in Vienna, but she was overcome with the heat and had to leave early. Frustrated, she sought out local churches to host the group, after receiving permission from the MSAA.
She found a home at the Methodist church, which offered its fellowship hall for the monthly meetings.
"We were delighted to provide space for them. The question for the church is always one of responsibility to its neighbors and its community," said senior pastor Ted David.
"I hope they’re going to be successful. I hope they accomplish what they hope to."
MULTIPLE SCLEROSIS is a disease that attacks the central nervous system – brain, spinal cord and optic nerves. People with MS sustain damage to the fatty tissue called "myelin," which surrounds their nerve fibers, resulting in weakening of neurological functions, in temporary paralysis, and, in some cases, blindness. Cognition is also affected. MS is not fatal, but most patients experience relapses that result in worsening symptoms for a period of time.
According to the Multiple Sclerosis Society, approximately 400,000 Americans acknowledge having MS, with about 200 people a week diagnosed. MS affects people mainly between the ages of 20 and 50, and from two to three times as many women suffer the disease as men.
For Siegel, MS has meant partial blindness — she has only 40 percent sight in her left eye — and restricted movement.
"When I was diagnosed, I didn’t want anyone else to know," said Siegel, who expresses her personal struggles through music and writing. To date, she said she has written more than 9,000 songs, and she recorded a CD in 1994 titled "Angry Acoustic."
The first meeting of the MS support group in Burke drew six people, including two with MS.
"It was really awesome," said Siegel. The others in the group declined to be interviewed for this story.
At the November meeting, which takes place on Thursday, Nov. 4, from 7:30-9:30 p.m., a nurse from neurologist Dr. Reuben Cintron’s office will speak, and a representative from the Access medical care products company will present some of the company’s products.
The most important aspect of the meeting for Siegel, though, is the opportunity for those in the group to share their personal experiences with multiple sclerosis.
"Look, we all have MS," she said. "I want the people in the group to understand that we’re all in different stages, but we all have it. You need to try to help yourself as best you can."