Elmhurst Woman Sheds Light on Stiff Person Syndrome Experience Amid Celine Dion’s Battle for Awareness

Moira Papp, a resident of Elmhurst and a mother of three teenagers, shares a common struggle with renowned singer Celine Dion: both battle Stiff Person Syndrome (SPS), a rare chronic autoimmune neurological disorder. Lauren Petty of NBC Chicago delves into Papp’s journey with the condition.

For Papp, SPS profoundly affects her mobility. She relies on a walker constantly and finds tasks taking significantly longer to complete. Additionally, she grapples with slurred speech, a symptom of the disorder. Despite these challenges, Papp maintains her sense of humor, referring to her speech impairment as a “gift.”

Papp was taken aback, along with many others, by Celine Dion’s surprise appearance at the Grammy Awards on February 4, 2024. While in awe of Dion’s presence on stage, Papp and some in the SPS community felt concerned that Dion’s appearance might not accurately portray the severity of the disease.

Dr. Amanda Piquet, Director of the Autoimmune Neurology Program at the University of Colorado, emphasizes the importance of raising awareness about SPS, which was initially termed “Stiff-man Syndrome” and predominantly affects women. Despite estimates suggesting its rarity, diagnosing SPS remains challenging.

Since her diagnosis in 2021, Papp has actively engaged with The Stiff Person Syndrome Research Foundation, contributing to the establishment of a patient registry to facilitate research efforts. Despite the difficulties posed by SPS, Papp remains optimistic, advocating for increased understanding and research to ultimately find a cure.

To further raise awareness, Papp founded “Moira’s Mission” and is organizing an inaugural fundraiser in Elmhurst on March 3, 2024, titled “A Fight to Find a Cure for SPS.” The event aims to garner support and resources for ongoing research and advocacy.

Papp’s resilience and commitment to raising awareness highlight the importance of community support and continued research efforts in combating rare diseases like SPS.

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