This year, on Rare Disease Day, I want to focus on Motor Neurone Disease (MND), also known as ALS in the USA.
There are thousands of rare diseases which affect millions of people globally. I often write about trigeminal neuralgia, a rare facial pain condition that I live with. But this year, I want to throw a little light on Motor Neurone Disease because it is affecting a member of my family.
What Is Motor Neurone Disease?
Motor Neurone Disease is a progressive neurological condition that damages nerve cells (motor neurones) in the brain and spinal cord, causing signals to stop reaching muscles. There is currently no cure. Although it is classed as a rare disease, thousands of people and families are living with its reality.
I don’t have the medical knowledge to go into more detail, other than to say that it is one of the cruellest conditions I’ve ever encountered. You can learn more about it on the NHS website.
My Cousin Has Motor Neurone Disease
In the Spring of 2024, my aunt in California spoke to me. She was worried about her son, Grant. He was 49 at the time, and he’d always been fit, healthy and very active, but something wasn’t right. He had several unusual symptoms, but initially, doctors couldn’t determine the cause.
The family was desperate for answers. But when the answer came, it was with the horrible news that Grant had ALS. It felt like it was the most devastating diagnosis he could have been given.
I can only imagine what Grant and his immediate family — his lovely wife, two daughters, parents, sister and her family are going through. Grant has shown amazing courage, which really doesn’t surprise any of us. He has also held on to his sense of humour and is trying to make every moment count.
Though we are thousands of miles apart — us in Scotland and them in California — we are a close family. Over here, we feel helpless, but even if we lived next door, we couldn’t take this awful disease from him. All we can do is hold them all in our thoughts and hearts, and hold on to the hope that a treatment can be discovered quickly to at least slow or stop the progression.
My Name’5 Doddie Foundation
I had heard of Motor Neurone Disease before Grant’s diagnosis. I knew of family and friends who had relatives with MND, and I had been following Doddie Weir’s story. Doddie was a legendary Scottish rugby player. He was physically fit and active and full of life and laughter. When he was diagnosed with Motor Neurone Disease, he used his celebrity status to campaign about the illness. He shared his story to raise awareness and set up the MND charity, My Name’5 Doddie Foundation.
Watching how his illness impacted him suddenly became more poignant when that cruel disease became my cousin’s reality.
Awareness About Motor Neurone Disease (ALS) is Vital
It is always devastating when anyone receives a diagnosis of Motor Neurone Disease. When a well-known person — whether a sportsperson or an actor — shares this cruel diagnosis publicly, it often brings the disease into wider conversation, generating vital awareness and fundraising.
Their openness and willingness to do this can only be admired. But Motor Neurone Disease is fought every day by thousands of individuals and families whose stories rarely make headlines — and they are no less courageous.
Where to Find Support
I have listed a few links to Motor Neurone Disease / ALS charities and organisations which offer much-needed support, fund research, and raise awareness.
Understanding, Awareness & Hope
Rare Disease Day is about raising awareness of lesser-known conditions like Motor Neurone Disease.. Many of these illnesses have a profound and often devastating impact — not only on those diagnosed, but on the families who love and support them. Every condition deserves better understanding, awareness, and continued hope for better treatments and, one day, a cure.
Thinking today of everyone living with a rare condition.
***
Thank you so much for reading.
If this post resonated with you, I’d love to hear your thoughts in the comments.
And feel free to share it with your friends or support groups.
Take care,
Liz.
Subscribe to my blog and follow me on my social media accounts to keep up to date with new posts:
Hold on to hope and never let it go