Dawnia Baynes first noticed something was wrong back in 2004. She was working at a Kinko’s at the time, and whenever she was on her feet, she felt like she was “walking crooked.” A visit to the doctor turned up nothing, the unsettling walking sensation disappeared, and she didn’t think about it anymore until two years later, when her body suddenly went numb from the chest down. This time, doctors ordered a battery of tests, including an MRI (magnetic resonance imaging); shortly thereafter, at age 26, she was diagnosed with relapsing-remitting multiple sclerosis (RRMS).
Baynes, who currently lives in Compton, California, was already intimately familiar with MS at the time of her diagnosis because her father, now 60, has it, too. He developed symptoms in 1993, and a few years later, in his early 30s, he was diagnosed with primary-progressive MS (PPMS). As a teenager, Baynes helped care for her father, but she was still shocked when she was diagnosed, because she had not realized that someone as young as 26 could get the disease. Watching her father become increasingly disabled by MS was sobering for Baynes. He went from walking with a cane to using a walker, then a scooter, then a wheelchair, and finally a power chair.
“Now he’s bedridden,” she says. “He continually gets worse. He now needs 24-hour care.” Nonetheless, she has kept her resolve to remain optimistic about her own future.
Life Changes With MS
In 2013, Baynes, who was then living in Georgia, moved to Los Angeles. There, she moved in with her mother and stepfather for safety reasons—she didn’t think that she should be living alone.
She had to stop working because her symptoms made it difficult to do her job as a business operations generalist, so she now receives disability payments. Two years ago, she stopped driving and gave her car to someone in need. She has difficulty living in her mother and stepfather’s house because it has stairs and a shower that isn’t very accessible. Baynes needs a walk-in shower, but they’re expensive and she doesn’t have the budget to make the home fully accessible.
“My body is extremely tight, and I can’t walk as far as I used to,” she says. When doctors recently administered the standard six-minute walking test given to people with MS, her distance had decreased significantly over the past two years. “I was able to walk 470 feet before, but this time I couldn’t even walk 200 feet,” she says. The results discouraged her, but they were also a reality check that she needed to focus more on her physical health.
Support That Really Helps
In order to stay upbeat about her diagnosis, Baynes knew that she would need support from others with MS. At the suggestion of a friend, she joined a group for younger adults with MS—people in their 20s, 30s, and 40s. “I got so much out of this group and was able to relate to what others were going through,” she says. When she was approached about becoming the group leader, she readily accepted, and the group continues to thrive.
Others get a lot out of the group as well. David Santini of Long Beach, California, now 38, was diagnosed with MS at 27. About two years ago, he joined Baynes’ group for young professionals—a decision that has had a highly positive influence on his life.
“They help you move forward and not just dwell on the negative,” he says. “I have gone to other support groups, but this is one of the best. We always update each other on how we are doing and help each other take that next step.”
They Call Her Their ‘MS Mama’
One night, a 14-year-old boy with MS came to one of the group meetings. Wesley Choy of Los Angeles, now 17, had been diagnosed at age 13. He became very depressed, so his mother, Yiwen Lin, searched online for a support group for him to join. Wesley wanted to share his fears and concerns with others in the same situation.
“I saw right away that this group was not for him,” Baynes recalls. “I even told his mother, ‘I feel like we are corrupting your son because we are talking about adult issues.’ Then this got me thinking about how a group for teenagers with MS could be really useful.”
So she started a support group aimed at kids 17 or younger and got a strong response. “It’s been a place where they can come and ask questions,” she explains. “We talk about everything from how they’re feeling to how they’ll be able to go to college even though they have MS.”
“I’ve met other kids who have what I have and we talk about everything,” says Choy, a senior in high school whose MS is now in remission. “It has been very valuable. Now I’m starting to think about going to college, and Dawnia has been really helpful with advice. The teens call her their ‘MS mama’!”
Help Others, Help Yourself
One of Baynes’ goals for the young people in her teen support group is to help them get financial aid for college. To inspire them, she recently brought in a speaker who had been diagnosed with MS as a teenager and had just earned her master’s degree at the University of Southern California.
“I want these kids to see that college is possible,” Baynes says. She works with them and their parents to make this dream possible.
She’s their cheerleader, too. “I will call and check in on the kids, and if they tell me they’re getting tired, I say, ‘What can you do differently? How can you change things in your schedule?’ I just want them to be able to live well.”
Baynes also urges those in her groups to become MS advocates. “I encourage them to go to MS State Action Day,” she says. (For info, go to nationalmssociety.org.) “I want them to speak up about health bills and to be involved and be their own advocates.”
Baynes is also grateful that the teen support group members have grown close to each other. “It’s tough to be diagnosed with MS as a teen,” she says. “My message to them is to keep living and living well. Don’t let your life stop due to an MS diagnosis.”
Helping others adapt to multiple sclerosis is Baynes’ mission. “I always say, I wasn’t diagnosed with MS for the heck of it, so I tell myself, let’s just keep going and find the bright side!”