Those living with Duchenne muscular dystrophy are more likely to experience learning difficulties and behavioural issues but nobody is exactly sure why. Scientists have shown that some forms of dystropin (the protein missing in Duchenne) are produced in the brain, but what it does and whether it’s important isn’t really understood.
To mark World Duchenne Awareness Day 2020 we’re highlighting some of the issues in Duchenne and how they can be managed.
Behaviour & attention – many families we speak to have difficulty managing their child or young person’s attention, learning and behaviour. Watch this fascinating recording to find out more.
Memory – from Kim’s game to pairs, Lego to shopping lists, find out simple but practical ways to help your young person develop their memory here.
Emotion – the frontal lobes have important functions in guiding our actions, reactions and responses. We hope this session recording helps you deal with the psychological effects of life with Duchenne.
Posture – wheelchairs, seating, orthotics and other equipment can be confusing and daunting for families. Take a look at this session recording which we hope you find helpful.
The initial focus following a diagnosis with Duchenne is understandably on the devastating physical prognosis. In time, the learning and behaviour side of the condition can become more apparent presenting a series of other challenges for child and parent alike.
A diagnosis of Autism or ADHD can unlock additional and targeted support at school and if you suspect your child may have particular behaviours or problems, for example in social interactions and obsessive or repetitive actions, you should push hard for an assessment. Our upcoming conference on 14 and 15 November is also a great opportunity to hear from professionals in this field and I would really encourage parents and carers, as well as teaching and learning support staff, to sign up for this year’s groundbreaking online event.
Mark Silverman, Duchenne Parent and Action Duchenne trustee
Find out more from the comfort of your own home
The brain and Duchenne is a key topic you can learn about at the virtual Action Duchenne International Conference 2020. Over the weekend of 14 and 15 November 2020, we’ll start with the science – finding out why dystrophin is in the brain and what it’s doing. We’ll talk about learning difficulties and behavioural issues faced by those living with Duchenne and their families, and how these can be managed and individuals supported.
You can register for the event below, tickets are free and all are welcome.
