Many of you may not know that for the past 15 years, our Dad, Simon, has been living with a rare autoimmune condition called Myasthenia Gravis (MG).

This June, for Myasthenia Awareness Month, the five of us are taking on the MyAware MyMiles Challenge to help raise awareness and funds for MyAware — a charity that has provided incredible support to Dad and our family over the years.

The MyMiles challenge is all about going the extra mile in your own way — whether that’s walking, running, cycling or rolling — and every mile helps shine a light on a condition that many people have never heard of.

We’d be hugely grateful for any contribution, no matter how small, or simply for you taking the time to read Dad’s story below to learn more about the realities of living with MG every day.

In Dad’s Words…

I have been living with MG since my diagnosis more than ten years ago. It is a chronic illness that causes weakness in the skeletal muscles that control breathing and movement, including the eyes, arms and legs. It can be my best friend and my worst enemy all at once.

I often explain it to people as living with a car that permanently has the fuel warning light on, or an electrical fuse box that keeps tripping. It’s exhausting and unpredictable.

You end up cancelling plans, sometimes at the last minute, and often feel guilty for doing so because, outwardly, “you look fine”.

At my worst, I struggled to coordinate my eye movements, lost vision through my right eye, and could sleep for 12 hours only to wake up completely exhausted. During that time, someone told me that one day I would see this illness “as a gift”. I laughed out loud when they said it.

Years later, with hindsight, I understand what they meant. MG changed my perspective on life and forced me to slow down, reassess what matters, and appreciate things differently.

Every day, I feel grateful for my wife, children, family and friends who have tried to understand the challenges of living with MG and who continue to support and encourage me.

I’ve also received exceptional care from NHS professionals, local specialists, physiotherapists, Pilates and yoga instructors, and personal trainers. They help keep me moving, even when my muscles would rather do anything else.

Thanks to ongoing treatment, medication and support, my MG is now well managed and allows me to enjoy the things in life that matter most.

What is Myasthenia Gravis?

Myasthenia means “muscle weakness”. It affects the muscles we consciously control — those used for walking, talking, swallowing, smiling and even breathing.

MG is an autoimmune condition where the body’s immune system mistakenly attacks the communication between nerves and muscles, preventing signals from getting through properly.

Symptoms can range from fatigue and muscle weakness to serious breathing and swallowing difficulties that can become life-threatening.

It’s estimated that around 20,000 people in the UK are living with myasthenia, yet awareness remains incredibly low. (Myaware)

MyAware works tirelessly to support people living with myasthenia and their families, provide advice and community support, raise awareness, and fund vital research that brings us closer to better treatments and, one day, a cure.

Thank you so much for reading and supporting our MyMiles challenge.