Summit County native Michelle Snider is trying to plan her future while fighting a rare brain disease
February 16, 2014
You can also donate directly at any First Bank to the “Michelle Snider OMS Fund”
On the slopes, it’s like nothing has changed for 27-year-old Michelle Snider. A former star ski racer for Team Summit and Summit High School, she glides like a pro over the snow, her muscles performing the tasks they were trained to do over long hours of hard work.
But when she gets to the bottom, something changes. Her swift, sure movements turn shaky and she has trouble balancing on her skis.
“I look like an expert skier when I’m skiing,” she said, “and when I get to the bottom, I look like a beginner skier. I fall over.”
It wasn’t always this way. For the past three years, Snider has been struggling with a rare neurological disorder that affects her muscles and her vision, making her often dizzy and nauseous, with muscle tremors and spasms.
One in 10 million
Snider, who is better known in Summit County by her nickname and maiden name, Shelly Miller, grew up in Summit Cove. She graduated from Summit High School in 2005 and attended the University of Colorado in Boulder. She then went on to continue her chiropractic studies in Portland, Ore.
That’s when the trouble started. She began to feel sick, then came the dizziness, double vision, shaking. For two years she struggled to find a diagnosis, until a friend of a friend, a medical professional, looked at her symptoms and pronounced it — opsoclonus-myoclonus syndrome (OMS).
OMS is a rare disease in which the body’s autoimmune system attacks the brain. Its symptoms include “dancing eyes,” wherein the eyes dart back and forth involuntarily, and muscle spasms. It’s estimated that it strikes about one in 10 million people, Snider said.
Snider’s case is even rarer, however, in that she contracted it as an adult. According to the OMS website omsusa.org, the disease is usually diagnosed in children under the age of 2. This made it even more difficult for Snider to get the diagnosis confirmed. Once she suspected that’s what was causing her illness, the only people she could reach out to were pediatric specialists.
“They can’t see you because you’re an adult, and then I’d get passed around from doctor to doctor,” she said. “Sometimes they’d be convinced I had MS (multiple sclerosis), for instance, and they’d do all the testing and it’d come back clean, and then they’d be like, ‘You’re making that up, it’s just all in your head, you’re stressed with school.’”
Eventually, after a trip to an adult OMS specialist in New York, Snider’s diagnosis was confirmed and she started treatment.
Snider’s treatment includes weekly IVIG infusions, delivering antibodies intravenously. The weekly treatments are expensive, in the tens of thousands of dollars, and each one takes six hours to complete.
“Sometimes the infusions give me energy and sometimes they make me really tired,” she said.
After her initial treatments, those around her began to notice a difference.
“When she came back from New York and went to school the following semester, people were like, ‘Wow, you were a different person. We thought you were really kind of quiet or different,’ because her personality had been altered by the illness, to the point she wasn’t herself,” said her father, Merrill Miller. “She’s normally a very bubbly, outgoing person.”
Currently, Snider lives in Denver with her husband, Jesse, who is an ensign in the Navy and enrolled in medical school. The two met while attending CU Boulder, working together in the laboratory and later becoming friends. They went on outdoor adventures together, hiking, backpacking and rock climbing. He proposed in April 2010, and she fell ill not long after that.
“Basically from the day we were engaged, I’ve been sick. So we haven’t had the typical marriage,” she said. Nevertheless, the two were married in June 2011 at the Silverthorne Pavilion.
Things haven’t been easy for the young couple. Last year they struggled with insurance coverage of Snider’s condition, resulting in a three- to four-month lapse in coverage.
“She regressed horribly, to the point, … I thought to myself, do we get a second on our house? Because we have to pay for this somehow,” Miller said.
Eventually, that problem was straightened out, but the bills are still substantial. Snider experienced a further setback in December, when a bout with viral meningitis left her hospitalized.
Hope for the future
Despite all that’s happened to her, Snider is determined to push through. Her latest ray of hope is the Carrick Brain Center in Atlanta, Ga., a multidisciplinary brain rehabilitation center led by Dr. Ted Carrick. The center has built its reputation on rehabilitating people with brain injuries, particularly athletes who have sustained severe concussions.
Although attending the center usually requires a one- to two-year wait, Snider managed to get an appointment for April. She will live at the center for a week, undergoing an intensive program, in hopes of alleviating her condition.
“My goal, ultimately, is not to be on disability but to be able recover from it and work and help others,” Snider said. “Then, hopefully, I can start my life.”
She has already made steps toward that goal. Even before her illness, she was drawn to the medical field, wanting to help children in particular.
“I’m working towards my diplomat certification in neurology, which is where I’ve learned a lot about childhood neurologic disorders, like autism,” she said.
Snider is working on opening her own chiropractic practice in Louisville, where she plans to treat children with a variety of diseases such as autism, ADHD and, of course, OMS.
While her illness has made it difficult for her to work, she stays focused on her goal. She connects with others affected by OMS on Facebook. The support groups mainly consist of parents, as the majority of those affected are young children.
“So I spend a lot of time talking to parents, explaining what it feels like, as an adult,” Snider said.
“She has a huge passion for helping children, especially,” said her mother, Marsha Miller, “and so our hope is that she’ll be able to get treatment for this condition and be able to function normally and do what she really has a passion for, and that’s treating children with similar type disorders.”
Snider and her family have started a fundraiser in order to help pay for her treatments and her trip to Atlanta. Their secondary goal is to tell more people about OMS.
“We hope that this will be a way to make people in the community more aware of this rare disease,” Marsha Miller said.
Snider has a lot of plans — to start her business, to research and help others with neurological diseases, to get healthy enough to go on a trip with her husband far away from any hospitals — but in the meantime, she’s getting ready for Atlanta, which she hopes will be the beginning of a new stage in her life.
“I’m excited,” she said. “I definitely am excited but nervous, because I’ve had varying opinions if it will for sure help or not, but my gut instinct tells me that it’s going to help, and I don’t want to give up until I try everything.’
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