life with duchenne

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What is Duchenne? Duchenne (pronounced dew-shenn) is the most common form of muscular dystrophy, with over 20,000 children diagnosed each year. Primarily affecting boys, Duchenne causes the skeletal, heart and lung muscles to progressively weaken and degenerate.

THe journey begins

When a child is diagnosed with Duchenne, a family's life is divided into "before" and "after". One day, you're just living your life, trying to figure out what to make for dinner, or wondering what your kids will be when they grow up. And then Duchenne comes in.

The diagnosis may be quick and straightforward or marked by years of doctor appointments and unexplained symptoms. Either way, it’s a shocking, merciless blow. Our old routines are shrouded in doctor appointments, endless medical tests, and piles of corresponding bills. Our lives are divided into "before" and "after"...comments you make, questions you ask, or conversations you have about your child are qualified with "before he was diagnosed" or "after he was diagnosed".

There is no instruction book. There is no manual, no roadmap, for this journey. A parent or family may no longer feel sure how to function or how to cope. We understand. But, together, we can find happiness in the heartache, purpose in the pain, joy in the journey. We are here to help.

We believe that there is great hope badge

Duchenne does not only affect the boy who has the diagnosis

This disease doesn’t happen in a bubble. Duchenne affects the entire family and their community. Boys are not only "Duchenne patients." They are someone’s son, someone’s grandson, someone’s student…cousin…best friend…brother. They have dreams and goals and so much to contribute. They are so much more than their diagnosis.

They are so much more than their dignosis

Duchenne is typically diagnosed between the ages of 2 and 6.

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Early signs of Duchenne include delays in the ability to sit, stand or walk. Boys with Duchenne typically develop an unusual walk and have trouble running and climbing stairs.

Though the progression of the disease can vary, most boys are wheelchair-bound by the age of 12.



Currently, there is no cure or treatment for all Duchenne patients that stops the progression of Duchenne.

but there is great hope.

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There are now 5 approved treatments that have the potential to slow the progression for almost 30% of boys and young men with Duchenne.

Thanks to scientific advancements, life expectancy for individuals with Duchenne has increased and many young adults work, travel, attend college and have full happy lives.  



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