A diagnosis of Duchenne muscular dystrophy (DMD) can come as a shock to parents and caregivers. Resources and support from family and friends can help you and your child navigate the diagnosis and feel less alone.
DMD is a rare genetic disorder that causes muscle degeneration and weakness. It’s caused by changes to a protein called dystrophin. Dystrophin helps strengthen muscle fibers and protect them from injury. Symptoms start around age 2 or 3 and get worse over time. But new therapies and advances in care have greatly increased life expectancy.
This article breaks down the best way to adjust to DMD and explain the condition to your child, your child’s school, and your loved ones, so you can all connect in a way that improves your child’s care.
Receiving a diagnosis of DMD can be overwhelming. You may have many unanswered questions and feel like there’s nowhere to turn for help.
Though DMD is rare, there’s a large global community ready to help you navigate the ins and outs of your child’s diagnosis.
While you can enter this new world at your own pace, it’s important not to bottle up this information and take on the burden by yourself for too long. Sharing the diagnosis may help to relieve some of your stress.
As you gather information about your child’s diagnosis, work with your child’s primary care doctor to find support and advocacy groups. These organizations specialize in helping you adjust and access resources.
Here are a few contacts to get you started:
It’s important your child sees a neuromuscular specialist who is familiar with DMD. You may also need to put together a team of specialists like a social worker, pulmonologist, speech therapist, nutritionist, and physical therapist.
Consider reaching out to the following organizations to find the right care team:
Though you might hesitate to tell your child the details of their diagnosis, accurate information will allow your child to build a community of support early on.
Not telling your child about their diagnosis can result in guilt, distrust, misunderstanding, and tension. It can also hinder the development of positive coping strategies.
When do I talk with my child?
Experts suggest talking with your child when they’re as young as 3 or 4 years old. The earlier you start, the more normal it will feel to have these conversations become part of everyday life.
It also avoids misunderstanding and sets an expectation that the child will participate in medical decisions later in life. Make sure to emphasize that your child didn’t get DMD because they did something wrong.
You can also include your child in discussions during doctor’s appointments. As your child enters adolescence, they can be given the opportunity to talk with doctors without a parent present.
How to explain muscular dystrophy to a child
A discussion about muscular dystrophy can center around topics that relate to your child’s daily life. For example, explain to them how DMD makes their muscles different, which makes it harder to run as fast as other kids. Use simple terms at first and allow the conversation to evolve over time.
It might be helpful for your child to meet another person with a more advanced stage of DMD, so they can understand how the condition might impact them in the future.
If you’re having trouble knowing how to explain DMD to kids, online videos and picture books might help.
It may take some patience to explain DMD to family and friends. They may have never heard of the condition before. Telling family members sooner rather than later can offer emotional and practical support to you and your child.
Open communication with your child and the people in their life, including siblings, family members, and close friends, is likely to improve your well-being as a caregiver.
You don’t need to tell all of your friends at once. Consider starting with your closest friends. You can direct them to educational websites so they can learn more about how DMD will affect your child.
Your child may be bullied, teased, or excluded by other kids who don’t understand their condition. Reach out to school staff to ensure that a teacher explains to the class that your child was born with a condition that causes their muscles to get weaker over time and that your child isn’t contagious.
In addition, it would be a good idea to let the teacher know your child may:
- need adaptive or assistive devices
- need a walker or a wheelchair
- require extra time to get to class
- often miss class due to appointments
Caregiving can be very rewarding but often leads to self-neglect and burnout.
To support yourself, ask your child’s doctor for a care coordinator. This person acts as a central resource for questions you may have and will smooth communication between your child’s care team.
Research suggests that caregivers who engage with a large support network often feel a better sense of well-being.
Take steps to avoid caregiver burnout, like:
- asking a friend to help every once in a while
- doing meditation or yoga for stress relief
- joining a caregiver support group
- continuing to participate in social activities and hobbies
- eating healthy and exercising
- getting enough sleep
Talking about DMD with your child gives them the vocabulary they need to explain their condition to their peers and develop independence and resilience for later in life.
Talking about DMD with your child’s school, family, and friends helps build a network of support and community. As a caregiver, you should feel comfortable turning to your loved ones and your child’s care team for help when you need it.