source: Parent Project UK
The diagnosis is devastating for families as boys will see their muscles waste so that by around 10 years they will be in a wheelchair and without treatment will die on average at 19 years. Improved medical care is seeing young men living longer but services have to be fought for and are poorly coordinated across the UK. Yet DMD affects far more than just muscles.
Cognitive and behavioural characteristics are also associated with the disease. Some boys will have severe learning difficulties, yet the majority will have a normal intellectual level. Many boys experience specific difficulties with learning that are at present going undiagnosed.