Their Stories
Schwannomatosis patients have been telling their stories for years — in waiting rooms, on forums, in research papers, on camera. These are some of the ones already in the public record. More are being written every day.
Named Stories
These patients chose to tell their stories publicly and by name. Click through to read the full account at the original source.
“I was 18 when my right arm became paralyzed — then came the diagnosis.”
Lauren was 17 when mysterious arm spasms, fainting spells, and loss of sensation began. On her eighteenth birthday, her right arm became completely paralyzed. An MRI revealed a low-grade schwannoma. She was told the surgery was extremely risky — but she recovered. A decade later, in January 2023, the tumor had regrown. Now 31 and living in Surrey, U.K., she documents her experience on TikTok (@laurenpapagreen) and Instagram (@itslaurenpapagreen) to raise awareness and educate others on the realities of living with a brain tumor.
Read the full story at Newsweek→“It started with what everyone called sciatica. I was 26.”
He spent years being treated for back pain and sciatica before an MRI revealed a tumor on his L5/S1 spine. Surgery, recurrence, radiation — none of it held. It wasn't until a basketball injury sent pain radiating down his arm, years later, that a neurologist finally ordered a full spinal MRI series. A schwannomatosis diagnosis followed. He eventually found Dr. Scott Plotkin at Massachusetts General Hospital. A small brain tumor was discovered in 2010 — too small to act on, but finally named.
Read the full story at Children's Tumor Foundation→“Years of surgeries, paralysis, deafness, radiation, chemotherapy, and countless uncertainties — and still here.”
Jessica's story is one of accumulated loss and extraordinary endurance. NF2-SWN took her hearing and tested her mobility through multiple surgeries. She emerged not only as a survivor but as an advocate — a reminder that the patient who has been through the most often becomes the one who helps others find their way through it.
Read the full story at Children's Tumor Foundation→The Research Behind the Number
The 16.7-year figure is not an estimate. It comes from peer-reviewed work by researchers who dedicated their careers to proving what SWN patients already lived.
Understanding barriers to diagnosis in a rare, genetic disease: Delays and errors in diagnosing schwannomatosis.
Merker VL, Bergner AL, Bhatt S, et al. Am J Med Genet A. 2022; 188(8):2414–2425. doi: 10.1002/ajmg.a.62860
The study that put exact numbers to what SWN patients already knew. 97 patients, two U.S. tertiary care clinics. Documented the cascade of delays — intermittent symptoms, psychiatric misattribution, pathology errors, failure to trigger genetics referrals — from first pain to finally having a name. The 16.7-year median is now the baseline against which everything else is measured.
Collections & Communities
Larger libraries of stories, research, and community discussion — all external, all attributed, all worth reading.
Your story belongs here too.
Every account above was written by someone who decided that what happened to them was worth saying out loud. You choose how much to share, who sees it, and whether your name is attached. Your story is yours.
Write Your SWN Song →