Elmhurst woman Stiff Person Syndrome Celine Dion battle awareness

Elmhurst mom with rare disease shares connection with Celine Dion. Both women suffer from Stiff Person Syndrome. Fundraiser set for March 3.

Moira Papp, an Elmhurst wife and mother of three, shares a rare connection with global superstar Celine Dion - they both suffer from Stiff Person Syndrome (SPS), a chronic autoimmune neurological disorder. This condition significantly affects Papp's mobility, requiring her to use a walker at all times and taking her three times longer to complete daily tasks. Additionally, Papp experiences slurred speech, a common side effect of SPS. Despite the challenges, Papp maintains a sense of humor, referring to her slurred speech as a "gift" and acknowledging the neurological nature of the condition.

On February 4, 2024, Celine Dion made a surprise appearance at the Grammy Awards, leaving many in the SPS community both in awe of her stage presence and concerned that her appearance did not convey the severity of the disease. Papp, like many others with SPS, emphasizes the hidden struggles that come with the condition, as outward appearances can often be misleading. The upcoming documentary featuring Celine Dion's life with SPS is expected to raise awareness and educate the public about this rare disease.

Stiff Person Syndrome, initially known as "Stiff-man Syndrome," predominantly affects women and is challenging to diagnose accurately. Dr. Amanda Piquet, Autoimmune Neurology Program Director at the University of Colorado, stresses the importance of defining and diagnosing the disease more effectively to advance research and clinical trials. Papp, diagnosed in 2021, has been actively involved in creating a patient registry through The Stiff Person Syndrome Research Foundation, aiming to turn patient data into valuable research for the rare disease community.

Despite the daily struggles, Papp remains optimistic about the future, hoping for a cure and actively working to raise awareness through her organization, "Moira's Mission." The inaugural fundraiser, "A Fight to Find a Cure for SPS," is scheduled for March 3, 2024, in Elmhurst. Papp's determination and resilience serve as an inspiration for the SPS community as they continue to advocate for better understanding and support for individuals living with this rare condition.