My DMD Hero

🗣 One Duchenne parent was told, “Your son looks like he’s going to play football. Look at those calves!”

At first glance, young boys with Duchenne Muscular Dystrophy (DMD) may appear to have strong, muscular calves, but this is actually due to a condition called pseudohypertrophy—where muscle tissue is gradually replaced by fat and scar tissue.

Instead of being a sign of strength, pseudohypertrophy is one of the early indicators of DMD, as the body tries to compensate for muscle loss. Over time, muscle function declines, making walking and movement more difficult.

Understanding these hidden signs of Duchenne can lead to earlier diagnosis and better care.

📢 Help us spread awareness—share this post!

🔗Read More: https://www.ncbi.nlm.nih.gov/books/NBK482346/

🌟 Today's Question!🌟

👉 What hobbies does your child with Duchenne love to participate in? 👈

As a DMD parent we want nothing more than to see the joy in our kid's eyes when they are doing what they love. What is it that lights up your kid? What video game, sport, hobby, or whatever are they in to? Share it here and give some other parents ideas! Maybe even find a friend for your son to enjoy a hobby with! Ready. Set. Go!

📸 Post a photo!
🔗 Share a link!
💬 Tell your story!

As DMD parents, we need to stick together and support each other! 🙌 Over the next few weeks, we’ll be posting a series of questions inviting you—our amazing DMD PROS (the parents) —to share your best ideas on various topics that impact the quality of life for families with Duchenne-affected children. 💪✨

Thank you in advance for being so awesome! 🙏 We can’t wait to hear from you! 😊

👧 Did you know? Duchenne Muscular Dystrophy (DMD) is often thought to only affect boys, but girls can be affected too, though it’s much rarer.

Most girls are carriers of the DMD gene, meaning they inherit a mutated X chromosome from their mother. Since girls have two X chromosomes, the healthy X typically compensates for the mutated one, so girls usually don’t show the full symptoms of DMD. However, in some cases, girls can have mild symptoms due to X-inactivation, where the healthy X doesn’t fully compensate.

But in very rare cases, girls can inherit the mutated gene from both parents, resulting in them having the full condition of Duchenne. These girls can experience the same muscle weakness and challenges as boys with DMD.

Understanding that girls can be carriers and, in rare cases, affected by DMD is important for raising awareness and providing support to every member of the DMD community.

➡️ Share this to help others understand that Duchenne affects both boys and girls, though in different ways.

🌟 Today's Question!🌟

👉 When it comes to clinical trials, what advice have you found most helpful? 👈

We know that finding, traveling to, and navigating clinical trials is a burden and a blessing. What has your experience been? What tips can you give another family about getting into a trial? Is the process hard, easy? What about knowing when to leave a trial? Please jump in and share your opinion and experience!

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As DMD parents, we need to stick together and support each other! 🙌 Over the next few weeks, we’ll be posting a series of questions inviting you—our amazing DMD PROS (the parents) —to share your best ideas on various topics that impact the quality of life for families with Duchenne-affected children. 💪✨

Thank you in advance for being so awesome! 🙏 We can’t wait to hear from you! 😊