Stories to tell — South Asian Heritage Month

As part of our Race Equality in Research project, the Parkinson’s UK Research team have been working to hold 'Living Well with Parkinson's' awareness events. The aim of these events is to build connections and share information with communities who are currently underrepresented in Parkinson’s research.

We know we need to do more to make sure that Parkinson’s research represents everybody. But first, we need to make sure that we are listening, addressing the barriers, and serving the needs of all communities to facilitate their involvement in research.

Read more about the Race Equality in Research events.

In June 2023 we worked with Shafaq, a member of the Race Equality in Research steering group, to hold an event with the South Asian community in Bradford. In honour of South Asian Heritage Month, Shafaq shared with us why it was so important to her to share her story with the South Asian community at the event.

"Being from the South Asian community myself, I feel strongly that we need to help raise each other up. Taking part in the Bradford event helped me do just that.

"I felt empowered to contribute to further the understanding of Parkinson’s within the heart of the South Asian community in Bradford. It was a real privilege. I was honoured to have been asked to speak and help coordinate the event.

"I was asked to begin the event by sharing my story about my journey with Parkinson’s. Whenever I share my story I feel somewhat emotional, but also this time I was excited. Excited to share my story with people from my community who would innately get some of the things I was referring to. Things like worrying about telling my friends and family for fear of the stigma that can surround long term health conditions. Or the lack of understanding about the condition.

"I strongly feel that further understanding of Parkinson’s can only be achieved through recording research data from everyone who is impacted by the condition. As such, the lack of diversity within research is very disappointing. Research might be missing key things because research studies don’t reflect everyone with the condition. Without a complete understanding of the condition how will a cure ever be found?

"We desperately need to address the lack of representation in Parkinson’s research. South Asians must be encouraged to get more involved with research, and must be made to feel like research is relevant to them too. Otherwise, how will the whole range of the condition ever be understood? Without this full understanding, we can’t know that there will never be a cure, or even treatments, that can be tailored to specific individuals or communities."

Find out more about our Race Equality in Research project on our research blog.