An estimated 50% of individuals living with Parkinson’s Disease (PD) choose to hide their diagnosis, a statistic that underscores the stigma and misconceptions surrounding the condition. Amongst the million people affected by PD in the United States, up to 20% have experienced symptoms before reaching the age of 50. Globally, women constitute 40% of the ten million individuals living with PD. The PD Avengers, an international group founded in 2022 by Larry Gifford, aim to change the narrative around Parkinson’s. They are rebranding the disease with younger, more diverse, and resilient profiles that emphasize the vibrancy within the Parkinson's community.
The PD community tirelessly works to raise awareness that those affected are not solely elderly but include young and dynamic individuals. Stigmatization and ostracization often plague those with PD, fostering anxiety and fears of discrimination. The recent speculation over President Biden’s potential PD diagnosis has only served to amplify these issues, further stigmatizing the disease.
“When you see the entire media machine taking shots at someone who may have the disease, it’s like a curse word,” – Larry Gifford
The need for accurate representation and information is critical to combating fearmongering and misconceptions about PD. Environmental factors have also been identified as significant contributors to PD risk. The United States Environmental Protection Agency has banned chemicals like TCE and Perc due to their association with a 500% increased risk of developing the disease.
Dr. Indu Subramanian, a Clinical Professor of Neurology, has dedicated her research to understanding how loneliness impacts those living with PD. Canada saw 12,500 new PD cases diagnosed between 2019 and 2020, adding to over 103,000 existing cases in the country. These statistics reflect the widespread nature of the disease and highlight the urgent need for continued awareness and research.
Esther Labib, a 49-year-old mother from Texas, was initially misinformed about her diagnosis, fearing she would "lose her mind and die." Her journey underscores the importance of providing accurate information and fostering open communication within families. Labib’s 11-year-old son’s curiosity about her diagnosis highlights how essential it is for families to discuss PD candidly.
Allie Signorelli, a patient from Washington, D.C., emphasizes the necessity for positive imagery and accurate information about living with PD. This aligns with the mission of the PD Avengers, who strive to counteract "fearmongering" campaigns with vetted facts and uplifting portrayals of those managing the disease.
“keep people in the PD closet for longer” – Larry Gifford
The stigma surrounding PD often pushes individuals into hiding their conditions longer than necessary. By rebranding PD with younger and more diverse images, the PD Avengers hope to alter public perception and showcase resilience within the community. The initiative aims to reduce anxiety and encourage individuals to seek support openly without fear of discrimination.
