Moira Papp, a resident of Elmhurst and a devoted mother of three, shares a unique connection with renowned artist Celine Dion. Both women confront the challenges of living with Stiff Person Syndrome (SPS), a rare autoimmune neurological disorder. In an exclusive interview with NBC Chicago’s Lauren Petty, Papp opens up about her experiences, shedding light on the realities of SPS and its impact on daily life.
For Papp, every step is a testament to her resilience. Affected by SPS, she relies on a walker around the clock, navigating through life with grace and determination. “I’m a fall risk. I’m on a walker she discloses, illustrating the physical constraints imposed by the condition. Simple tasks become arduous undertakings, underscoring the profound challenges individuals with SPS encounter on a daily basis.
Despite the physical limitations, Papp maintains an indomitable spirit, finding solace in humor amidst adversity. Even as she grapples with slurred speech—a common manifestation of SPS—Papp embraces each day with unwavering optimism. “The slurring is a new gift. I’m gonna call it a gift, but it happens. It’s neurological,” she reflects, embodying resilience in the face of adversity.
The recent revelation of Celine Dion’s battle with SPS at the Grammy Awards has sparked conversations within the SPS community. While Papp acknowledges the admiration for Dion’s public presence, she underscores the importance of understanding the hidden struggles faced by individuals with SPS. Despite outward appearances, the journey of living with SPS is fraught with challenges that may not be readily apparent to others.
Dr. Amanda Piquet, Autoimmune Neurology Program Director at the University of Colorado, emphasizes the significance of raising awareness about SPS. Formerly known as “Stiff-man Syndrome,” SPS predominantly affects women and remains notoriously difficult to diagnose. However, with increased awareness and understanding, strides can be made towards accurate diagnosis and effective treatment strategies.
Papp is actively engaged in advocacy efforts, collaborating with The Stiff Person Syndrome Research Foundation to establish a patient registry aimed at advancing research endeavors. Through her advocacy and the forthcoming documentary chronicling Celine Dion’s journey, the SPS community endeavors to dismantle misconceptions and foster greater support for those grappling with this rare disorder.
As Papp navigates the complexities of life with SPS, her story serves as a beacon of hope and resilience. Through her unwavering determination and advocacy, she continues to shine a light on the realities of living with SPS, inspiring others to embrace resilience in the face of adversity.
