As Volunteers’ Week (2–8 June 2024) gets underway, a London woman living with a rare genetic condition is calling on others to help make a difference by volunteering.
Tahira Mathur, 31, from London, following a series of MRIs and genetic tests in 2022, was diagnosed with GNE myopathy, an ultra-rare genetic disorder that leads to muscle weakness and wasting, usually beginning in the feet and lower limbs and gradually spreading to other parts of the body. Although she is still able to walk with the help of orthotics and a walking stick, her mobility is significantly affected. Uneven terrain, crowded spaces, and bad weather can make it particularly difficult for her to move around.
The mother of one reflected on her long journey to diagnosis, “My journey to a diagnosis wasn’t straightforward. In my early 20s, I started to notice small changes in the way that I walked. I was struggling to lift my feet, often tripping and falling very frequently. Climbing stairs became particularly challenging, I couldn’t run anymore and even simple everyday tasks became harder.
“It took a few years, but receiving a diagnosis was a huge relief. Then the reality hit me quite hard – this was a progressive condition with no cure. What would my future look like?”
Despite the challenges, Tahira has channelled her experience into action. She is now a dedicated advocate working to raise awareness and support others affected by muscle-wasting conditions.
She serves on Muscular Dystrophy UK’s Lay Research Panel, a group comprised of individuals affected by muscle-wasting conditions, either directly or indirectly. The panel plays a crucial role in reviewing research grant applications to ensure they align with the charity’s strategic goals and address the real needs of those living with neuromuscular conditions.
While a cure remains elusive, Tahira remains hopeful that continued research could lead to breakthroughs for future generations.
Alongside her research advocacy, Tahira actively fundraises and raises awareness through her family fund, Tahira’s Team, which she launched in late 2023. The fund supports the charity’s mission to advance research and provide crucial services for people living with these conditions. She regularly shares her personal story to amplify the charity’s work and to promote greater visibility, inclusion, and action.
“Being diagnosed with a neuromuscular condition can feel incredibly isolating,” Tahira said. “It’s a lot to process and it’s easy to feel like no one really understands. That’s why charities, like Muscular Dystrophy UK, are so important—they offer not just practical support, but a real sense of connection. Whether it’s through in-person or virtual meet-ups, Information Days or simply being a trusted place to turn when you’re navigating a life-altering diagnosis, that support can make all the difference.”
Tahira added, “Volunteering for Muscular Dystrophy UK is an opportunity for me to try and help make a difference. It’s given me a sense of purpose and a community of people who truly understand the unique challenges of living with a neuromuscular condition. I’d encourage anyone with time or lived experience to get involved. Together, we can make a difference.”
Tahira is also an active member of the charity’s South Asian Neuromuscular Community group.
