Thank you for taking the brave step to find out more about your child’s diagnosis of Duchenne muscular dystrophy.
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.
It is important to remember that each person is different and has a unique physical makeup. Your child will experience Duchenne differently to others and giving you a definitive ‘across the board’ life expectancy for your child is impossible and unfair, particularly as standards of care and therefore life expectancy are improving all the time.
Seeking help
Right now it is likely that you feel lonely, devastated and out of control. Seeking information, knowledge, taking control, getting help and keeping positive are all key things you can do right now to reduce those feelings and to help you cope with the diagnosis of Duchenne muscular dystrophy.
We can help you. Contact our support team via info@actionduchenne.org or 07535 498 506 to have an informal chat over a cup of tea; find out how we can equip you with the resources, support and advice to help you navigate your journey.
In life, there are friends and there are family, and then there are friends who become family – this is how I describe the Duchenne community – a worldwide family brought together by this one diagnosis
Duchenne Parent
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.
A helpful checklist for newly diagnosed families
- Contact Action Duchenne support team on 07535 498 506 or email info@actionduchenne.org
- Watch recordings from our newly diagnosed family information event
- Find out about how to talk to your child about Duchenne?
- Join a support event – we run online and in person support sessions. For more information contact 07535 498 506 or email info@actionduchenne.org
- Hear from other Duchenne families
- What are clinical trials?
- Take a look at our list of guides and information
- Sign up to receive Duchenne news
From the first phone call, I felt completely understood and supported. Speaking to other DMD parents who work for Action Duchenne has truly been a lifeline for me, and they have never wavered in their support and patience.
Duchenne Mum
