Healthy Habits: Duchenne Muscular Dystrophy

 

February 28th is Rare Disease Day, and I have a chance to post this information about one rare disease - Duchenne muscular dystrophy.

Like most moms, Laura McLinn had plans for her son’s future, hoping to help him fulfill his dreams. But when Jordan was almost four years old, he was diagnosed with Duchenne muscular dystrophy, a progressive disease which causes muscles to slowly waste away. The diagnosis was a complete shock to his family, but his mom quickly realized that this was their journey, and they were going to make every day the best day ever going forward. 

And that’s exactly what they’ve done. After researching potential treatment options Jordan and his family decided to enroll him into a clinical trial for a new treatment for patients with Duchenne muscular dystrophy. The family had so much hope that this could help their son.

Now, Jordan and his family are celebrating the success he’s had in the clinical trial for the treatment which was received Accelerated Approval by the FDA for Duchenne patients who have a specific mutation like Jordan. His mom says it’s been incredible to watch all the positive changes he’s been experiencing, during the four years since he’s been receiving the treatment. Jordan who is now 12-years old, says he tries to make every day the best day ever. 

Jordan is one of an estimated 10,000 boys in the U.S. with this rare disease. Early signs of Duchenne include delayed ability to sit, stand or walk. Patients face increasing loss of mobility and by adolescence many require the use of a wheelchair. In teenage years patients begin experiencing problems with heart and lung function that leads to serious, life-threatening complications.

You can learn more in this interview with Laura McLinn, who talks about her son Jordan’s journey and how she and her family approach every day and never gave up hope. She’ll also discuss how she has become an advocate for helping others with Duchenne muscular dystrophy and will offer advice to other parents about options available that can help.

Interview courtesy: NS Pharma