The Today Show (online) featured Janie’s story last year, primetime coverage of a rare disease. Janie was always a hard-charger with a big career and kids to raise on her own. The perplexing symptoms came in her mid-50’s: she couldn’t walk down stairs well, her legs felt heavy in the pool, she developed Type I diabetes, she dropped to 85 pounds. SPS changed her life dramatically, but Janie tells The SPSRF, she’s a lucky lady.
Without SPS awareness in the medical community in Kenya, a lack of access to reliable insurance, and her own reluctance early on to undergo multiple tests, Joy Lwangu’s SPS went undiagnosed for almost 15 years. As a result, she lost her voice and her ability to walk. Now she’s fighting the clock to fundraise for a treatment that she hopes will change her life.
Joy writes, “It is simply a disease that remains invisible to the world around you for years and finally gets diagnosed when your degeneration is too drastic to be ignored. If the same standard was applied to many other diseases? Diabetes, high blood pressure? How many people would be dropping dead daily? Death rates should not be what gets research funding and leads to better training in medical school. Quality of EVERY LIFE on earth is key.”
She had been a physician for 21 years and never heard of Stiff Person Syndrome, until she was diagnosed with it.
Dr. Kelly Morgan faced that diagnosis with denial. She had been active and healthy her entire life, and couldn’t accept what was happening to her body. But as far as SPS patients go, she was lucky. Because she was a doctor, she knew what to say, what to ask for, and whom to turn to. She was diagnosed in less than two years, which is warp speed for SPS patients.
The SPSRF features Kelly in April, a time when spring forces us to look at life in a new way. This was true for Kelly too, who had to reframe her entire view of a disease, not as the physician but as the patient.
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.