Living with a disability comes with its own set of challenges, but for 33-year-old Priyaneet from Birmingham, it has also sparked a journey of advocacy and community support.
Diagnosed at the age of six with Charcot-Marie-Tooth (CMT) disease—a genetic condition that impacts the peripheral nerves—Priyaneet has transformed her personal experience into a force for change. A vital part of the Muscular Dystrophy UK’s South Asian Neuromuscular Community group, her work helps create a safe space for individuals and families to connect, share experiences, and access crucial resources.
In this article, Priyaneet shares her story of living with a disability and highlights the importance of representation.
Can you share your journey of living with Charcot-Marie-Tooth (CMT) and how it has shaped your life?
Living with a muscle wasting and weakening condition can be exhausting, stressful and lonely. With endless medical appointments, physiotherapy, treatments, and respiratory support. It can also be worrying knowing that my condition is progressive and how I’ll manage in the future. My Sikh faith keeps me grounded, focused and steers me in the right direction and gives me hope.
I always say my condition gives me a purpose and drains me at the same time. It’s taken me a lot of self-love, care and kindness. Along with the support from my family and friends, great medical professionals, coaching and therapy, it’s helped me to accept my condition. Through the community therapy I’ve learnt how to manage my condition through varies techniques and built my confidence. I now realise that my differences bring a new perspective.
Although, I’m fairly independent I try not to let my disability take over my life. I do find daily physically activities challenging. I often rely on my family members to support me with this. For example, help with cooking a meal or carrying my food, and sometimes cutting up my food. It took me time to accept asking for help is okay and doesn’t mean I am weak.
My condition has shaped my life in a positive way. It has given me a purpose, a voice and determined the career I’ve navigated for myself. From a tech geek to now a disability coach and diversity, equity and inclusion leader, that aligns with my purpose, values and focuses on making meaningful change for a more inclusive and accessible world, as well as giving individuals hope they can achieve anything they put their mind to.
Do you feel there is enough awareness about neuromuscular conditions within South Asian communities? If not, what barriers exist?
I believe there is not enough awareness about neuromuscular conditions within the South Asian community. Several barriers contribute to this issue. One major challenge is the lack of South Asian representatives in community services who can effectively communicate with families. This gap makes it difficult for individuals to access the support they need.
Additionally, there is a deep-rooted stigma around disability, with some families seeing it as a source of shame. Many believe that a disabled person is unable to lead a fulfilling life. Culturally, South Asian communities often hesitate to seek help, as doing so may be perceived as a sign of weakness or dishonour. In some cases, disability is viewed as a form of karma—punishment for past actions.
Another key issue is the lack of knowledge about genetics and how it influences neuromuscular conditions. Many are unaware that marrying within the same family or certain genetic factors can increase the risk of these conditions. Additionally, there is a general lack of understanding about what neuromuscular conditions actually are. To bridge this gap, information must be made more accessible. Educational materials, such as leaflets, videos, and personal stories, should be available in multiple languages at GP surgeries and community centres.
The Muscular Dystrophy UK’s South Asian Neuromuscular Community group plays a vital role in providing support. It offers a judgment-free space where individuals can connect with others who understand their experiences. By coming together, they can navigate challenges, support one another, and find comfort in a community that sees and hears them.
What can attendees expect from the Muscular Dystrophy UK Information Days in Birmingham and London?
The Muscular Dystrophy UK’s information days are important as it helps bring together the muscle wasting and weakening community. The days are full of inspiring people all with common interest and problems. It’s a community of like-minded people with different experiences and perspectives that are looking to help each other. It’s a place to connect, share experiences, and access valuable resources.
I enjoy volunteering at these events to show up for the South Asian community. Showing those who have neuromuscular condition, you can have a voice that adds value. By sharing my experiences, I hope this gives comfort and encourages people to reach out for the support they need. On the day people will be able to hear from experts and learn about the support Muscular Dystrophy UK can provide for people living with muscle wasting and muscle weakening conditions. Plus, discover more about the groundbreaking research work taking place to help understand the different conditions better, which will hopefully lead to development of new treatments.
What changes would you like to see in how neuromuscular conditions are understood and addressed in the South Asian community?
I’d like to see more people talking and have more information about neuromuscular conditions available in our communities e.g. places of worship, within GP surgeries, our healthcare practitioners advocate and how people from the South Asian community can get support.
I’d like the South Asian community to see those with a neuromuscular condition, as a human, as an individual that can achieve things in life, individuals that have dreams and those dreams can become reality. For them to be part of society and be accepted.
How can people who are not directly affected by neuromuscular conditions contribute to raising awareness and improving inclusivity?
Be curious, listen and do not be judgmental. Don’t judge a book by its cover. Get to know neuromuscular conditions, educate yourself, attend information days, read books, listen to podcasts - we have a wealth of information available to us. Get to know the person, who they are as human not just their disability. Be an ally stand up for treating people right, for humanity, for a more inclusive and accessible world it will help everyone regardless of having a disability. And just be kind.
Priyaneet will be attending Muscular Dystrophy UK’s Information Days in Birmingham on Saturday, 8 March, and in London on Friday, 21 March. She encourages individuals living with a muscular dystrophy condition, along with their families and carers, to join these free in-person events, which are open to everyone across the UK.
The Information Day is part of a series of events happening across the UK. Upcoming Information Days include London (21 March), Scotland (29 March) and Northern Ireland (4 June). For any enquiries regarding the Information Days, please contact Muscular Dystrophy UK at [email protected].
