If there is anyone who knows how to navigate a rare disease, it’s Meg Bayer. I recently had the pleasure of connecting with Meg, an amazing young woman diagnosed with SPS at 16 years old. Yes, kids get this disabling disease too. Despite a catastrophic seizure landing her in a coma for 10 days, Meg has continued not only to train in Tae Kwon Do, but also compete. All from her wheelchair! We share the same condition, and I’m sharing her story here because it is an inspiration.
The lowest point came on Christmas Eve when the pain from SPS was so great, Shane James wished he weren’t on this earth. The thought of his two children, asleep upstairs, expecting Santa and all his magic, snapped Shane out of it. What was left of that “fight or flight” moment was an inner desire to run.
And run he did. Somehow, even with his debilitating condition, Shane managed to run marathons around the world. He pushed past those limits, taking on ultramarathons like the 149mi/240km race up Mt. Kosciuszko, Australia’s highest mountain. A documentary about his feats on foot says it all: Run To Live.
In 2020, Shane found Dr. Tara Zier and The Stiff Person Syndrome Research Foundation on Facebook. He was floored: he never imagined his condition would have worldwide recognition. It gave him hope, and even more energy to take on the run of his life, Traversing Tassie, to shine a light on SPS.
Imagine spending six years struggling to understand the muscle spasms and chronic pain taking over your body.
Despite countless visits to doctors, many of whom accused her of feigning her severe, days-long spasms, Jacqui Atkinson fought for answers. She held onto her hope and faith until she found one: Stiff Person Syndrome.
Writing from her bed, she chronicled her difficult journey in a memoir, One In A Million, to raise awareness of the condition. Jacqui is generously donating 50% of book sales to The SPSRF. She is an inspiration.