Ever since Celine Dion, the popular superstar, announced the cancellation of her 2023 tour due to a diagnosis of Stiff Person Syndrome, or SPS, the disease has been in the…
Rare Community Profiles is a Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their families, advocates, scientists, and more.…
Céline Dion’s new milestone is her first-ever film, Love Again, which she stars in while living with a rare disease called stiff person syndrome. Céline expressed her wishes that…
Welcome to the Rare Classroom, a new series from Patient Worthy. Rare Classroom is designed for the curious reader who wants to get informed on some of the rarest, most…
Written by Meghan Bayer Stiff Person Syndrome Spectrum Disorder (SPSD) is an acquired, progressive, neurological spectrum disorder with features of an autoimmune disease that is believed to affect one to…
Before you read on, make sure to check out Part 1 of Sarah's story. In Part 1, Sarah discusses the traumatic (and life-threatening!) odyssey that led to her eventual Addison's disease diagnosis…
When Sarah Williams Maxwell was 18 months old, she was diagnosed with type 1 diabetes (T1D). Outside of managing this condition, Sarah was relatively healthy until 2014, when her diagnostic…
Singer Celine Dion recently acknowledged that she has an extremely rare neurological disorder called stiff person syndrome (SPS). According to a recent article in The Metro, the disease occurs…
Have you ever awoken in bed and thought that what happened the day before must have been a nightmare? It CANNOT possibly be true that I have a rare disease…
Today, follow along on a case study exploration to see how a 52-year-old woman finally received a diagnosis of stiff person syndrome (SPS), a rare neurological disorder. According to the…
Shane James has recently completed a 24-day long run to fundraise for the Stiff Person Syndrome Research Foundation, earning about $20,000 by the end of his trek. The run, called…
Sunday, March 15, 2020 was the sixth International Stiff Person Syndrome (SPS) Awareness Day. The patients who often are forgotten on this day of awareness are the rarest, most severely…
30 Things About My Rare Invisible Illness You May Not Know By Debra Richardson 1. The illness I live with is: stiff person syndrome & insulin-dependent diabetes. 2. I was…
A recent study published in BMC Neurology is revealing more information about an under-diagnosed and poorly understood medical condition called stiff person syndrome. An analysis of several patients that have been…
Sherry Jo Ward sits in an orange armchair, playing harmonica in the center of the stage. She leans forward on the matching ottoman for emphasis. Her walker is never out…
I contacted my specialist and he hunted down my primary's email from her office staff. She never replied to his email. When I called her office again to inquire as…
Dear Primary Care Clinics, Rare Disease Warriors Are Not Pariahs; We Are Your Patients. -From a SPS Fighter As a rare neuromuscular disease patient, who fought 21 years for a…
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