About Duchenne

Duchenne Muscular Dystrophy is an aggressive form of Muscular Dystrophy that affects 1 in every 3,500 boys born.

It leads to progressive muscle loss.

Every single muscle is destroyed due to a lack of protein.  It also affects the heart and the lungs.

There are very few treatments available to help all children at present. And no cure.

Stages of Duchenne

  • Age 3-5 – Diagnosis/trouble keeping up with peers
  • Age 6-9 – Muscles begin to deteriorate
  • Age 9-13 – Progressive muscle loss and damage/wheelchair dependent
  • Age 13+ – Heart and respiratory complications
  • Age 19+ – Ventilation dependent/24-hour care
  • Mid-late 20’s – Current average age boys will lose their life

The Facts

  • 60% are carrier cases meaning the mother carries the gene and passes this onto their new born child
  • 40% are spontaneous mutations meaning a child with Duchenne can be born without the mother carrying the faulty gene and therefore can affect anyone at any time
  • Around 50 boys are affected in the East Midlands
  • 2,500 boys are affected in the UK alone
  • 300,000 sufferers worldwide – that we know about
  • Boys affected by Duchenne may look healthy on the outside, but on the inside fatty scare tissue is what makes up a bulk of their muscle tissue
  • Duchenne causes respiratory impairment and cardiomyopathy in later years
  • Very few drugs prescribed for Duchenne – steroids which have serious side effects and Translarna which will only help around 13% of all cases
  • The landscape of research has changed dramatically over recent years and intensive research to find a cure is carrying on in many centres around the world
  • 60+ clinical trials are now taking place thanks to charities like Alex’s Wish
  • Care is improving and boys are now living longer – but still not long enough

Click here to view a video on You Tube that explains what this disease does to young boys