A woman’s journey living with MS in SC’s treatment desert reveals purpose
On a Sunday in church, Tara Shider’s mother noticed something that looked, at first, like a fleeting expression — a half-smile tugging on the right side of her daughter’s face. But the muscles kept tightening, climbing higher, turning painful, until Shider’s cheek pushed her right eye shut.
People stared. Some wondered if she was having a stroke.
Weeks later, on July 7, 2015, she would be diagnosed with multiple sclerosis — a chronic autoimmune disease that attacks coating surrounding nerve fibers. At 18-years-old, Shider was about to graduate from high school with plans of attending college to become a nurse.
Instead of meeting freshman enrollment deadlines, however, she became stuck with juggling steroid treatments and MRI appointments. And by 20, disability paperwork had replaced college orientation altogether.
“I kind of wish I was able to do it sooner,” she said of college plans that kept stalling and restarting.
Now 29 and living in Walterboro, a rural Lowcountry town, she is finishing a bachelor’s degree in health care administration, graduating in September — an achievement she frames not as a triumphant return to a path interrupted, but as a pivot toward a different kind of calling: advocacy.
“I was able to find my purpose in the process,” she said.
Shider’s story sits at the heart of a problem health leaders are now trying to confront: a growing gap in specialized care that leaves much of South Carolina functionally outside reach of the kind of medicine that can slow MS before it steals a person’s mobility, memory and independence.
A long drive for a disease that doesn’t wait
Multiple sclerosis is an autoimmune condition in which the body attacks myelin, the protective coating around nerves. The damage leaves scars — “sclerosis literally means scar,” said Dr. Sonia Singh, an MS specialist at the Medical University of South Carolina in Charleston. The more scars that accumulate in the brain and spinal cord, the harder it is for messages to travel through the nervous system.
“It’s a disease of multiple scars,” she said. “The more scars you have … the less roads there are for the (neural) signals to traverse.”
What makes the disease uniquely cruel, Singh said, is when it arrives: often in a person’s 20s and 30s, “young people in the prime of their lives,” when careers are beginning, families are growing, and time is already scarce.
And the consequences of delay can be irreversible. “Delays in diagnosis can lead to more disability down the line,” she said.
Around 15,000 people have been diagnosed with MS in South Carolina, with many more undiagnosed, according to Singh.
Patients in South Carolina living with the disease set alarms for 3 a.m., drive 1–4 hours to Charleston, and line up MRI and specialist visits on the same day because the next available slot might be months out, Singh said.
Some must pay for overnight hotel stays; others can’t drive because of vision or mobility problems. Some don’t have a reliable vehicle at all.
“We’re making a lot of assumptions that the patients can just get to us,” she said.
In the case of Shider, a trip to Charleston from Walterboro can mean a full tank of gas, parking fees and sometimes a hotel stay — costs she’s had to cover by leaning on family for support who also have to miss work to drive her.
When her disease was not controlled early on, the travel became relentless. In 2015–16, she logged six or seven MRIs in a year, which required follow-up care. She often stacked doctor’s appointments on the same day to limit the 100-mile back-and-forth trip.
And then came a relapse that changed the physical stakes.
In 2017, before a medication finally stabilized her condition, she went from walking unaided to needing a wheelchair, then a walker, then a cane — relearning basic movements many people take for granted while her inflammation slowly eased.
When she began receiving a new medication in 2017, her MS became stable and her visits decreased — fewer scans, fewer trips, fewer days consumed by the drive, she said.
But fewer does not mean easy. Even now, Shider undergoes treatments twice a year, an MRI annually and specialist visits multiple times a year — all built around distance.
A pilot project to bridge the gaps
South Carolina is now the first state where the National MS Society has launched a pilot project aimed at “bridging these gaps,” by strengthening referral pathways, educating primary care providers on early warning signs and connecting patients with supports that can make care less fragmented, Singh said.
The goal is not to turn primary care doctors into specialists, Singh said, but to help them recognize when symptoms that seem orthopedic or age-related — a numb leg that doesn’t resolve, unexplained bladder problems — might be neurological. It is about speeding up the pathway to the right MRI, the right neurologist and the right treatment.
For Shider, that idea is personal. A physician from her adolescence, her pediatrician, refused to let uncertainty linger as she approached adulthood.
“Before I release you to your adult doctor,” Shider recalled her saying, “we’re going to diagnose this.”
Singh put the urgency into three words that Tarra said she replays “multiple times” in her head: “Time is brain.”
It is a clinical truth and a moral one — that geography, transportation and money can decide how much of a person’s future remains intact.
“I want people to know that your health outcome shouldn’t be affected by where you live or your location,” Shider said.
Even amid what Singh calls an MS desert in South Carolina, Shider has learned to measure life the way neurologists do: not only in years, but in miles, and in the time it takes to get help before the damage becomes permanent.
