“The voices of women living with Parkinson’s disease must be amplified”

A new global study suggests that issues impacting women with Parkinson’s are being neglected – and its researchers have written a ‘call to action’ to help tackle the issue

Led by US-based health provider UCLA Health, a new global study has suggested that women’s experiences of Parkinson’s have been an “overlooked field” – with its authors calling for more research in this area.

The study highlights gaps in awareness about sex and gender differences in Parkinson’s diagnosis and management, and has identified a lack of research around social factors that impact quality of life for women managing the condition.

“Studies looking at sex and gender differences in Parkinson’s have not led to personalising care or inspiring new avenues of scientific and clinical research,” the authors wrote.

A crucial challenge is the delay women can experience in receiving an accurate Parkinson’s diagnosis. The authors emphasised the importance of raising awareness of the “unique constellation of symptoms” impacting women with the condition, such as anxiety, depression and sleep disturbances.

The team also drew attention to the different effects Parkinson’s risk factors can have on women compared to men. For example, while caffeine consumption has a low-risk association for men, it can increase the risk of the condition for some women.

Catalysing “real change”

To address “the unmet needs” of women with the condition, the authors have written a ‘call to action’, with several recommendations designed to address Parkinson’s gender gap.

These include creating a framework to back research – supporting more inclusive drug and device studies. Helping healthcare professionals to accurately diagnose, identify and treat unique symptoms of Parkinson’s in women is also a priority.

The study’s research team includes women with Parkinson’s – like Ireland-based dietician Richelle Flanagan, and co-founder of global organisation PD Avengers Soania Mathur. Both took to social media to share the study’s publication:

So privileged to have been part of this amazing group of women! Our paper Unmet Needs of Women with #Parkinsonsdisease Gaps and Controversies. Important issues to address. @PdAvengers https://t.co/ce3b8Ycbhx

— Soania Mathur, MD (@SoaniaMathur) January 21, 2022

To make these changes a reality, the authors said that giving women with the condition a platform to share their perspectives would be crucial. “The voices of women living with Parkinson’s must be amplified,” they wrote, “to catalyse real change in this neglected field.”

Read more:

“We do ourselves an injustice by just suffering through it”

Women and Parkinson’s: menstruation, medication and motherhood