An MS diagnosis inspires a woman to give to her community
Ask Rae Edwards about her multiple sclerosis diagnosis, and the founder of Multiple Sclerosis Radio will tell you about her accident.
In October 2001, a car crash left her in a coma with hip fractures and memory loss. She spent a month in the hospital learning to walk again.
The following February, just as she was regaining her strength, Edwards was getting ready for bed when she felt like the clothes she was wearing were tightening around her. “I was trying to loosen the clothes, but they were getting tighter and tighter,” she says. “I got up to go to the bathroom, crashed into something and fell on the floor. I was laying there thinking ‘I can’t get up.’”
It was transverse myelitis, a neurological disorder caused by inflammation of the spinal cord. Its cause isn’t always easy to trace, but it is often associated with a viral infection. That night, it struck at first with excruciating pain, then paralyzed her temporarily. She spent another month relearning how to walk.
Doctors attributed the episode and subsequent dizziness and memory loss to the accident. But after eight years, she was officially diagnosed with multiple sclerosis in 2010. MS, a chronic yet treatable disease of the central nervous system, is thought to be an attack on the brain and spinal cord by the immune system.
Like many who learn they have a medical condition, Edwards, 40, went to the Internet for information. The search was tedious, she says, and yielded lots of useless and dated information. “This is why I started this station,” Edwards says. “I’m more interested in learning from people rather than I don’t think it’s the best thing.”
The site includes videos and audio interviews with people living with MS and physicians who treat them. It offers advice on how to handle changes in balance as well as in skin and hair. “I’m trying to make it user friendly,” she says. “I’m trying to make it a one-stop shop.”
Multiple Sclerosis Radio is a group of eight websites with channels that include wellness, spirituality, research, a book club, radio, video and a store. She created the site not only to consolidate MS information, but also to put some people with MS to work. She pays 40 people about $10 an hour to help promote the site and generate connections between her station and other MS sites. The station’s reach is in the thousands and includes people in the U.S., Canada and Kenya.
Edwards describes her symptoms as mild and can’t say for sure if they were caused by the accident or MS. But her biggest symptom is memory loss. She still has her cognitive ability, but she has a harder time retaining information, she says, so continuing nursing school and her duties as a patient information representative at Jamaica Medical Center in Queens was impossible.
Still, Edwards was reluctant to quit working. “We’re West Indian. We work!”
In 2009 she filed for disability, but she was denied and fell on hard economic times. She had to move into Susan’s Place, a homeless facility for “medically frail” people. She reapplied later, was approved for disability and other aid, moved to Sandy Springs, Georgia (an Atlanta suburb), and went to work on the website, which debuted in 2010.
Inspired by the attentive, wrap-around care she received while living at Susan’s Place, Edwards kept working. What she earns goes back into the site—and into the pockets of those with MS with varying degrees of disability.
“It’s important because many of us had ability and it was taken away,” she says. “[People with MS] want a purpose in life again. It’s my plan to give people with MS a spotlight and a purpose again.”