June is Myasthenia Gravis (MG) Awareness Month, and I’m proud to be part of ‘My Miles’, a campaign to raise awareness and funds for people living with MG, like me.

MG is a chronic condition that causes unpredictable muscle weakness and extreme fatigue due to disrupted communication between the nerves and muscles. Things many people take for granted, such as walking, speaking clearly, eating, or even smiling, can become daily challenges.

Myaware - the only charity in the UK solely dedicated to Myasthenia Gravis - created ‘My Miles’ campaign, which I’ve proudly joined in order to raise awareness, fight stigma, and show support for all the vital services the charity provides: essential information, care, and advocacy for patients, families, and healthcare professionals.

That’s why I’m walking and cycling every day to collect as many steps/miles as I can for the ‘My Miles’ challenge. All funds raised will go directly to Myaware ensuring they can continue to support us, and that we fight MG together.

Myasthenia Gravis suddenly took over my life a couple of years ago. I went from walking 10,000 steps a day to crawling around the house due to weakness. I couldn't swallow any food, was too weak to chew, and could barely get down soups and smoothies to keep me alive. I lost a lot of weight very quickly. I used to be a singer and performer, and loved playing gigs with my husband all over the country. Our music project, Quirky Folk, was starting to take us on some exciting adventures. When Myasthenia hit, I could no longer sing due to breathlessness and weakness. I couldn't play instruments without nearly fainting. Every time I tried to fall asleep, I would wake up gasping for air or choking. The disease can be terrifying and life altering in its impact. Because it's rare, doctors didn't recognise what was wrong with me, and several thought it was all in my head! Thankfully, I eventually got diagnosed by the neurology team at UCLH.

Since my recent diagnosis, Myaware have done so much to support and educate me about this condition that has affected my life so much. A lovely lady called Anna spoke with me for nearly an hour when I had gone through the whirlwind of a diagnosis and a hospital admission! She gave me information that I needed - a wealth of resources - and gave me hope about my future. I've since joined a support group where I've been able to chat to people who also have this rare disease, which helped me feel less alone.

I want say thank you to Myaware by taking part in this challenge. Walking can be difficult for me at times due to muscle weakness and double vision, causing breathlessness and dizziness. Low impact cycling is also pretty challenging even for a short time, as it affects my breathing a lot. I will be taking part in this challenge in my own way, slowly and carefully, but with lots of passion and gratitude as my fuel!