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What is Duchenne?
Duchenne muscular dystrophy is a rare, muscle wasting condition which occurs mainly in boys and is often diagnosed around the age of 2 to 4. Although there is no cure for Duchenne, improvements in standards of care mean that the prognosis for people living with the condition is better than it has been in the past.
You are likely to hear people mention life-expectancy for people living with Duchenne. You will see numbers ranging from 25 to 50, with 30 probably being the most common. But the truth is that nobody knows the “right” number.
Sarah’s story
Sarah received the devastating news that her son, Jack (3) a funny, caring, football-loving little boy has the rare muscle-wasting condition Duchenne muscular dystrophy.
Her world fell apart, she felt like she could not go on. Everytime she looked online, she saw stories that made her feel worse. She was just about holding her family together, supporting her partner, trying not to cry in front of her other children, and trying desperately to keep it together at work.
At Jack’s first Neuromuscular appointment, Sarah asked her Consultant for some help in finding a positive, supportive organisation where she can speak to other Duchenne parents.
The Action Duchenne Support Officer was a fellow Duchenne mum, who gave Sarah hope for the future.
That was when Sarah contacted Action Duchenne, a phone call which will be etched on her mind forever.
She spoke to a Support Officer who gently listened to her story, empathised with how she was feeling and was there for her, truly there for her, in a way she never expected was possible. The Support Officer was a fellow Duchenne mum, who gave Sarah hope for the future.
They talked about people living fulfilling lives; such as going to university, becoming Paralympians, travelling, finding love, or simply just being happy despite Duchenne. They talked about next steps for Sarah, and information she could seek out to help her, such as watching the free support webinars, or joining the Action Duchenne Mum’s Facebook group. They arranged to speak again on Zoom in a week’s time, so that Sarah could gather more questions and feel supported.
Help support Action Duchenne
We would love to keep in touch with you and hope you will choose to do one of the following things to help us;
- Opt in to receive fortnightly news about our vital work, much needed projects and progress here.
- Become a Member of Action Duchenne by setting up a regular donation here.
More about Action Duchenne
Action Duchenne has a very clear vision: a world where lives are no longer limited by Duchenne muscular dystrophy.
While we hope that research and clinical trials will one day lead to a treatment, or cure, for Duchenne, we believe it is vital to support families living with the condition today. We support families from diagnosis through their whole Duchenne journey.
When you make a donation to Action Duchenne, your gift will give the children, young people, adults and their families living in the United Kingdom access to;
