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About 
Duchenne

Duchenne Muscular Dystrophy

Duchenne Muscular Dystrophy is the most common fatal genetic disorder to affect children around the world.

If you've got it, you can't produce dystrophin, a protein you need to build up your muscles. As a result, every muscle in the body deteriorates.

At the moment there is no cure.

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Psychosocial aspects

Living with Duchenne can present complex challenges, and the support for both individuals with Duchenne and their families is crucial. Psychosocial and emotional issues can arise at any time, and it's essential to communicate any difficulties to your neuromuscular team. These issues may include challenges with social interactions, learning problems, excessive anxiety, behavioral outbursts, and an increased risk of neurodevelopmental disorders.

 

Addressing psychosocial and emotional well-being is vital for you and your families overall health and should never be ignored. If you have worries, concerns, or questions about the diagnosis or your own mental health, seek support. Anxiety, depression and anticipatory grief are common and we are here to help bridge the gap between NHS support and your time of need.

Get support with a Chrysalis grant here

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The facts

One in 3,500 boys is born with it, and in the UK 2,500 kids has it at the moment. You can have it, no matter where you are or what your ethnic background is. A third of all cases start in the womb, with no warning before the baby is born. Girls can also get Duchenne with around 1% of Duchenne births being female.

Although we know a lot about how Duchenne is caused, current treatments are pretty limited. Steroids and daily stretching are what most doctors recommend, but they have their drawbacks and don't prevent debilitating muscle contractures. 

The facts about Duchenne are inescapable:

  • Duchenne Muscular Dystrophy is 100% fatal

  • Most kids with it die in their late teens or early twenties

  • Most with it are usually in a wheelchair by the age of 12

  • It leads to respiratory failure, heart failure, and other debilitating orthopaedic complications

Image ©Image: CureDuchenne / Blingophilly.org

Psychosocial aspects

Parents who encourage open communication and are willing to answer questions create a supportive environment for their children. When addressing these questions, it’s crucial to respond openly and honestly, tailoring the answers to their age level. Although discussing Duchenne can be challenging we can offer valuable information, guidance, and resources to assist in these conversations. 

It’s essential to recognise that the impact of Duchenne extends to the whole family, including parents and siblings who may also face social isolation and depression. 

It is Duchenne, but we are here for you.

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