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NDF Certified Patient Advocates 

Mona Patel - United Kingdom

Mona Patel - United Kingdom

My Story

Hello!

I’m Mona and live in the north of England. I am British. My parents were born in India.

In 1996, I graduated from Birmingham City University with an honour’s degree in Sociology & Developmental Psychology. After graduating, I worked for the British Broadcasting Corporation (BBC), then the National Health Service (NHS), and since 2000, I have been working for Manchester Metropolitan University as an Equality & Diversity Specialist. I am also a devoted mother, wife, daughter and friend.

In 2002, aged 29 years I was diagnosed with GNE Myopathy (GNEM).

 

My Life Before my Diagnosis

Up until my early 20s, I was very active and independent. I loved going out, cooking, swimming, dancing and Yoga-Pilates.  Just like any young person, I had many hopes and aspirations for my future.

Before my disease progressed, I accomplished many wonderful things; my greatest achievement was in 2002, when I gave birth to my beautiful daughter, Lea (now an NDF United Youth Ambassador[1]). Sadly, GNEM managed to even taint this euphoric period of my life because I had just received my diagnosis. I was constantly fatigued, feeling bewildered and anxious due to the uncertainty of my diagnosis. Back then, accessible information about GNEM wasn’t available.

 

My Life After Diagnosis

Since the onset of the disease, GNEM has slowly deprived me of my muscle strength. I am at a stage now where a lot of my mobility is limited. I can hardly walk, I can’t run or climb stairs and there’s a continual feeling of vulnerability in case I fall. I can’t do the things most people take for granted such as cooking a meal, popping out to the shops, getting dressed, reaching up to scratch the top of my head, sometimes I can’t even use the toilet independently.  As soon as I start adjusting, I lose another function, so I have to find another way to adapt - the challenges are endless. It pollutes every part of my life including that of my loved ones.  

I am grateful to have brilliant caregivers in my life who continue to enable me and ensure that I have a decent quality of life. 

Fortunately, the UK Government has robust disability equality laws to make sure disabled people have reasonable adjustments and it also has an amazing ‘Access to Work’ scheme ensuring disabled employees can work and be retained in suitable employment.

 

My Life Now

Life now is very different for me because I have learned to embrace my disability. I have found a new sense of purpose and use my limited energy to make a difference.  I consider myself an Agent for Change.

There is a proverbial saying in the UK that “Every cloud has a silver lining”, which is used to convey the notion that no matter how bad a situation might seem, there is always a good aspect to it. GNEM has brought kind, resourceful and inspiring people into my life for which I am enormously thankful. In fact, I’d go as far to say that the disease acts like a ‘filter’; making me more discerning by only allowing true friends and family pass through and become part of my circle. 

Inadvertently, GNEM has provided some unique opportunities too, such as being able to travel the world and leave a legacy by being able to contribute to a life-changing treatment through studies and trials.

Every day, this disease teaches me about resilience and empathy - it’s helped me to confront barriers and stigma in order to improve the lives of others. So, although I miss the ‘old’ me, I am happy with the ‘new’ me because, (without sounding boastful!), I am now an award-winning Equality & Diversity Specialist working for an award-winning university, I’m a Fund Raiser and of course, I’m proud to be a NDF Certified Patient Advocate who organised the first ever patient day in the UK.  I’ve also set up the first GNEM Page and UK Support Group on Facebook and helped Muscular Dystrophy UK establish a dedicated GNE myopathy webpage for our GNEM community in the UK.

I am committed to using my limited energy to help the GNEM community and our partners in any way I can.

 

Patients being Patient

I totally understand that our GNEM community are frustrated with the long wait for a treatment to be approved. I am very grateful to the NDF and biopharma companies who are investing into research providing light at the end of the long, dark tunnel. I hope that before long, a treatment will be made available and possibly, even a cure. I don’t want anyone ever to suffer the negative experiences that are brought about by living with GNEM.  I appreciate, that any treatment or cure, must be first and foremost, safe for us.

 

Patient Power

It’s inspiring to see the GNEM patient community taking control, collectively driving forward important changes and organising initiatives to help eliminate the isolation, remove hurdles, and provide vital support to each other including caregivers. More importantly, it motivates and empowers us to keep pushing ourselves to never give up hope.

 

Thank you for taking the time to read my story. 

You can e-mail Mona here

 (Please note that my experiences are my own and are not representative of all GNEM patients).

 

 

[1] NDF’s United Youth is a safe space for the children of GNE Myopathy Patients. It is an online community where children, starting around the age of ten, and teenagers can share their experiences and offer advice to one another.