About Duchenne
Duchenne
in numbers
1
of the most serious genetic diseases in children
1 in 3,500
boys born worldwide
2,500
boys affected in the UK (approx)
300k
boys affected globally (approx)
2
families every week receive a diagnosis in the UK
12
the age boys require a wheelchair in 90% of cases
We need your help.
Get involved and help us defeat Duchenne – for good.
About Duchenne
Duchenne Muscular Dystrophy (Duchenne) is a severe, progressive genetic condition that primarily affects boys.
- Duchenne crosses all races, cultures, and backgrounds
- Girls can also be affected and make up around 1% of diagnoses
What causes Duchenne?
Duchenne is caused by a genetic mutation that stops the body from producing dystrophin, a protein essential for healthy muscle function.
Without dystrophin:
- Muscles weaken and break down over time
- Muscles cannot repair themselves properly
- Strength, movement, and independence are progressively lost
Around one in three cases occurs in families with no previous history of Duchenne.
Early signs and diagnosis
The average age of diagnosis is around four years old.
Early signs may include:
- Delays in sitting, walking, or talking
- Difficulty keeping up with peers
- Speech delay or frequent falls
How Duchenne progresses
Duchenne affects everyone differently – even siblings with the same genetic mutation can experience very different progression.
- Muscle weakness usually begins in early childhood, affecting the hips, thighs, shoulders, and pelvis
- During the teenage years, weakness spreads to the arms, lower legs, and trunk
- Because dystrophin is also missing from the heart and lung muscles, breathing and heart function are affected
- Some individuals may experience learning or behavioural challenges
With improved care, many people with Duchenne are now living into their 20s and 30s, and ongoing research and clinical trials continue to improve quality of life and outcomes.
Duchenne
in stages
Age 3-5
Diagnosis and difficulty keeping up with peers
Age 6-9
Muscle weakness becomes more noticeable
Age 9-13
Progressive muscle loss and wheelchair use
Ages 13+
Heart and respiratory complications
Ages 19+
Ventilation support and 24-hour care may be needed
We need your help.
Get involved and help us defeat Duchenne – for good.