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Stories

Read real life stories from people in the muscle wasting and weakening community. Browse our blogs about a range of topics we think will interest you. 

STORIES FROM OUR COMMUNITY
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A photo of a lady talking to a man in an orange t-shirt
“I had to work through 11 years of repressed grief when I was finally diagnosed.”
Sarah had to wait more than a decade to receive a confirmed diagnosis of limb girdle muscular dystrophy (LGMD). She shares how this delay affected her mental health and also about her difficult experiences in the workplace.
Read “I had to work through 11 years of repressed grief when I was finally diagnosed.”
A lady with her arm round a boy in a wheelchair
Finding and enjoying a fundraising project
Sally has been fundraising for our community for over 25 years. She supports us in memory of her godson Jonathan. A keen gardener, Sally shares her thoughts on how opening your garden can support people living with a muscle wasting and weakening condition.
Read Finding and enjoying a fundraising project
Guinness World Record title for charity cycling challenge
In June 2023, Scott Mitchell, 46, from Kendal set off on an eight-day ‘Cycle the Nation’ challenge to go through every county in England. While he didn’t quite make it to all 48, Scott did visit 43 counties and, almost a year after completing the challenge, it was confirmed that he holds the Guinness World Record title for the most UK counties visited by bicycle in one week. Scott takes inspiration from his son, Alex, who lives with Becker muscular dystrophy, and his Cycle the Nation charity challenge raised £7,276.
Read Guinness World Record title for charity cycling challenge
A young boy with his mum, dad and sibling
Adversity > Aspirations > Adapting (an alternate Father’s Day Guide)
Father’s Day comes around once again which also means it’s nearly my birthday! Usually, it falls on the same weekend to the dissatisfaction of my wife, Louise. ‘Costs me a fortune’ is all I hear that weekend! I’ve written blogs around the time of my birthday before but never about Father’s Day and what it means to me. I come from a family where the dads get stuck in and we do our share and will always do anything for others, so I’d like to think that has continued down the family tree.
Read Adversity > Aspirations > Adapting (an alternate Father’s Day Guide)
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We’re calling for people living with a muscle wasting and weakening condition to get a timely diagnosis, and the earliest access to the right treatment, care and support
Read We’re calling for people living with a muscle wasting and weakening condition to get a timely diagnosis, and the earliest access to the right treatment, care and support
Happy couple pose with flowers on their wedding day
“This marathon was very special to me”: Running the Edinburgh Marathon in memory of husband
On Sunday 26 May, Helen Honour ran the Edinburgh Marathon. This was her fourth marathon having entered one every decade since taking part in the New York Marathon in her twenties, but this one was special as she was running for us in memory of her husband Andrew Crooks and his brother, Alex, who both lived with muscular dystrophy. Andrew died in December 2022, aged 58. Running alongside her friend Beck Addison, together they raised £2,773.
Read “This marathon was very special to me”: Running the Edinburgh Marathon in memory of husband
Two women stand by a pop-up banner at a conference
Limb girdle muscular dystrophy patient conference and standards of care development
Our Director of Research, Kate Adcock, attended two conferences in Amsterdam focused on LGMDR9, a form of limb girdle muscular dystrophy, at the end of May.
Read Limb girdle muscular dystrophy patient conference and standards of care development
Two women with cocktails in a trendy bar
“I worked as a carer while studying – it was the most rewarding job I’d ever had”
To mark Carers Week, Ellie shares her story about why she became a carer; how this has helped her career as a psychotherapist, and what she enjoyed about the role.
Read “I worked as a carer while studying – it was the most rewarding job I’d ever had”
A man in a wheelchair with a grey top on a light blue wall in the background
We’re calling for people living with a muscle wasting and weakening condition to be able to feel more financially secure
Findings from our community survey, 2023, and our cost-of-living survey, 2022, reveal our community have been disproportionately hit by the cost-of-living crisis.
Read We’re calling for people living with a muscle wasting and weakening condition to be able to feel more financially secure
Happy couple stand by open car boot with a table full of items to sell
“My family have been fundraising for Muscular Dystrophy UK for three generations”
Some of my earliest childhood memories involve fundraising for Muscular Dystrophy UK. From helping with jumble sales, running stalls at summer fairs, folding raffle tickets and gathering Christmas card orders, to watching my parents organise evening balls and events, the charity has always been part of my life.
Read “My family have been fundraising for Muscular Dystrophy UK for three generations”
Women on a beach with sand stretching to the sea
“There’re so many reasons why I love volunteering”
To celebrate Volunteers Week, our Presidents Awards Volunteer of the Year winner, Amanda Hayes, looks back at the volunteering opportunities she’s taken on over the years.
Read “There’re so many reasons why I love volunteering”
A man wearing headphones sits infront of a radio microphone and a computer
Bringing people together as a Muscle Group chair
Steve, who lives with Becker muscular dystrophy, has been our Southwest Muscle Group Chair for several years. As a lifelong supporter of our charity, he discusses what it’s like chairing one of our Muscle Groups, his love of volunteering and his campaigning journey.
Read Bringing people together as a Muscle Group chair

SHARE YOUR STORY

Telling your story is a powerful and positive way of showing what it’s like to live with a muscle wasting or weakening condition, or to be a loved one of somebody who has a condition. Your story has the power to inspire and give hope to others and remind them that they are not alone.