Live fully adult life despite myopathy


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For patients with Duchenne muscular dystrophy, life expectancy has increased by about fifteen years. Some go to school or work, despite severe disabilities and early addiction.

In Duchenne muscular dystrophy, we have gone from a survival that did not go beyond 18-20 years, in particular by respiratory failure, to well over 30 years today. 198325987 / Eléonore H – stock.adobe.com

In the space of a decade, thanks to the combination of a multitude of advances, large and small, the average life expectancy of patients with Duchenne muscular dystrophy has increased by about fifteen years. We have gone from a survival that did not go beyond 18-20 years, especially by respiratory failure, to well over 30 years today. “I even had a few patients over the age of 40”, indicates the Dr Alexandra Nadaj-Paklesa, neurologist at the Nantes CHRU who takes care of these adult patients.

This improvement is largely due to better cardiac and respiratory prevention. “The investment of families is also fundamental to support and encourage young people to overcome the constraints of drug treatments, physiotherapy, wearing braces …, and this even more from adolescence.”

“I have never really seen depression”

But the gain has been more on life expectancy than on actual functional maintenance. “From the age of 18-20, they start

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