Remarkable Women: Sydney Severance is on a mission to heal the world

CHARLESTON, S.C. (WCBD) – Ask Sydney Severance how she is doing, and she tells it like it is.

“Not 100-percent, to be totally honest….” But she is grateful for each step of the journey that began with her being bedridden.

Severance was an ordinary high school student. She was an active teenager, a competitive tennis player, and taking honors classes at Bishop England High School as a sophomore.

Then, in March 2020, as schools were shut down amid the coronavirus pandemic, Severance caught a virus – an illness that would leave her wheelchair bound.

When the virus passed, Severance was left with a dull, intractable headache, and as weeks went by, the headache never left, and she developed a sensitivity to light. Sound sensitivity, vertigo, vision changes, ringing in her ears, and a constant headache followed. Her condition worsened as time went on.

“I developed a lot of light sensitivity, and I couldn’t handle noise. I became a lot less social and would kind of withdraw to my room and stay in the dark … that’s when my family kind of started to be alarmed,” she said in a podcast interview with News 2’s Carolyn Murray in July 2023.

Severance spent months in and out of doctor’s offices, seeing specialists, getting diagnosed with illnesses that, to her family, didn’t seem accurate. After months of debilitating pain and no real answers, Severance found hope at the Medical University of South Carolina, where Dr. Sunil Patel, chair of the Department of Neurosurgery, suspected the teenager had hypermobile Ehlers-Danlos Syndrome (EDS) with craniocervical instability (CCI).

To confirm the diagnosis, Severance needed an upright MRI; however, a machine like that was not available in the Charleston area. In fact, the only machine of its kind was available hours away in Greenville, South Carolina. That meant she would have to endure a painful six-hour round trip to receive the test. The teenage patient said it was hard enough for her to sit up for more than 10 seconds and agonizing to sit for 30 minutes.

With some help, Severance made it to Greenville via private plane. The test was administered, and her diagnosis was confirmed as craniocervical instability. Now, treatment and rehabilitation efforts could begin.

“I have Ehlers-Danlos syndrome, and the Upright MRI helped to diagnose a spinal comorbidity called craniocervical instability, and because of CCI, I lost the ability to walk for about two years until I was able to get the correct diagnosis, the surgery, and the treatment to help. If I had been diagnosed earlier, maybe I could have prevented such a horrible decline,” she explained.

Her remarkable story, however, begins after her diagnosis.

Dr. Patel said traditional MRIs, which require a supine position, could not diagnose Severance’s condition, or that of many others, often leaving patients undiagnosed. He said it often takes years, even decades, before patients receive a diagnosis for EDS/CCI.

Severance found it vital to bring this advanced diagnostic tool to Charleston and launched a fundraiser, Operation Upright, to raise $1.2 million for an upright MRI.

“When she told me that she was going to raise money for an upright MRI, I said, ‘you plan on raising $1.2 million?’ A year and a half later, she delivers a check,” said Dr. Patel.

Her plan was a success.

The machine is now fully functional at the Medical University of South Carolina, where many patients are seen daily.

Dr. Patel nominated Severance for News 2’s Remarkable Woman award, and he won. Her story scored high among the hundreds of nominations people from across the tri-county submitted in late 2024.

“Not just because she was my patient, but after I treated her, I recognized an individual- a woman 16 or 17 at the time- who is very determined and resilient. I’ve never seen that kind of resiliency. I train neurosurgeons. They are supposed to be resilient. This patient was resilient,” he explained of his decision to nominate her.

“You take an individual with that much energy, determination, resolve, resilience- dealing with her own illness and doing something for her community, and she’s only 17? That person is going to shake the Earth,” Dr. Patel said.

Sydney is relieved that she has answers to her condition, but the greater satisfaction is what having an Upright MRI will mean for possibly millions of people.

Severance’s journey has not been easy; she has endured countless surgeries, taxing rehabilitation, and even lost the ability to walk and eat without a tube. But she remained strong, even when her body was not, and now attends in-person classes at Vanderbilt University, over 600 miles away from home.

“If you think about Sydney’s situation, her life took a very unfortunate turn, and if she hadn’t started doing this at her age, it’s possible it never could’ve happened,” said Mazli Mehar, who attends Vanderbilt University with Severance.

Mazli is proud to know her friend is being recognized in a big way. “Syndey deserves the honor more than anyone else I know,” she said.

Severance was selected as the Lowcountry’s Most Remarkable Woman after a panel of judges reviewed her story along more than a hundred others submitted to News 2 last fall. She will receive a $1,000 donation to the non-profit of her choice and will travel to Los Angeles this month to meet the many remarkable women chosen from across the country.

Once there, she could be named Nexstar’s Woman of the Year.