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Duchenne Muscular Dystrophy

Do you have Duchenne muscular dystrophy? Learn about joining the Canadian Neuromuscular Disease Registry.

What is Duchenne muscular dystrophy?

DMD is an inherited disorder, which usually affects boys (it is very rare in girls). The muscles become weaker as the boys get older. This is because the body cannot make the muscle protein called dystrophin. This makes the muscle cells weak and they gradually break down. Signs of weakness start when the boys are between 3 and 5 years of age (sometimes earlier). At first, the weakness is seen mostly in the legs and hips. The children may:

  • Fall frequently
  • Have trouble running as fast as their peers
  • Have trouble climbing stairs
  • Have trouble getting up from a chair
  • Develop big calves
  • Frequently walk on their toes and lean backwards to keep their balance

Eventually this weakness also makes walking more difficult and a wheelchair is needed. Gradually, all the muscles become very weak, including the muscles used for breathing and the heart.

 

Overview of DMD

 

Media

Dr Toshifumi Yokota

DMD Therapeutics — Exon skipping and antisense therapy for muscular dystrophy
Video Presentation

Presenter: Toshifumi Yokota, PhD, Friends of Garrett Cumming Research Chair, Muscular Dystrophy Canada, University of Alberta
Length: 15:30

Stuart Wickison

The Boy Who Can Never Grow Old
Documentary

Presenter: TVO
Description: This intimate documentary follows 19 year-old Stuart Wickison who is nearing the end of his life. His determination to live as a normal teenager has never been stronger.
Length: 46:10

Luke Melchior

Bearing Witness: Luke Melchior
Documentary

Presenter: NFB
Description: …a portrait of Luke Melchior who, at 26, has lived longer than most people with Duchenne Muscular Dystrophy, a progressive wasting of the muscles. Knowing his life will be relatively short has made Luke feel an urgency about making a lasting contribution…
Length: 51:10

Publications

The Diagnosis and Management of DMD:
A Guide for Families

If you would like to receive a printed copy of the DMD Guide for Families, please contact your local office, or call 1-866-687-2538 or email info(at)muscle.ca

Duchenne Muscular Dystrophy (DMD) in Canada

CNDR report on incidence of Duschenne Muscular Dystrophy in Canada

The Psychology of DMD

Contains information about intelligence, learning, behavior and other relevant issues.

Talking with your Children about Duchenne Muscular Dystrophy
Research Approaches for a Therapy of Duchenne Muscular Dystrophy
Updated, 2008
Diagnosis and management of DMD

Part 2: implementation of multidisciplinary care

The Respiratory Management of Patients With Duchenne Muscular Dystrophy

A DMD Care Considerations Working Group Specialty Article.

Best Practice Guidelines on molecular diagnostics in Duchenne/Becker muscular dystrophies
Review of DMD for the Pediatricians in the Community
Home Mechanical Ventilation: Clinical Practice Guideline

Patients with DMD — See Section 9 (pages 109-124)

 

Useful Links

Duchenne Connect

Offers a patient registry for the Duchenne/Becker muscular dystrophy community

The Parent Project – Duchenne Muscular Dystrophy
  • Anaesthesia and Sedation for DMD

    Thanks to better cardiac and respiratory care, patients with Duchenne muscular dystrophy (DMD) are living longer than in the past. Increased lifespan means it is more likely that DMD patient will undergo surgical procedures. Therefore, it is important to be aware of the risks and guidelines for patient care during and after surgery.

    learn more
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