Living with Duchenne muscular dystrophy (DMD) or caring for someone with the condition can be challenging. It’s often hard to explain these struggles to people who haven’t had similar experiences. Support groups can help by providing a safe space to connect with others in the DMD community who understand what you’re going through. These support groups can offer practical advice and emotional support for dealing with DMD, both after diagnosis and as the condition progresses.

Duchenne muscular dystrophy is a genetic disorder that causes muscle weakness and degeneration over time. Duchenne is similar to Becker muscular dystrophy, which is caused by different mutations (changes) in the same gene, but DMD is more severe. DMD usually appears in early childhood, primarily in males, and often leads to the need for a wheelchair by age 12. While DMD can significantly affect quality of life, support groups can help ease some of the challenges of living with DMD.

How Support Groups Work

Support groups bring people together to share their experiences and support one another. Some support groups for people with DMD are led by someone who also has the condition. Others may be led by a family member of someone with DMD, a social worker, a nurse, or a psychologist.

It’s important to note that support groups are different from group therapy. Group therapy focuses on specific mental health treatments and is led by licensed clinicians.

Some support groups might be specifically focused on emotional support, while others might be focused on education about the condition. Some may do both. Support groups may meet in person, or they may be online, such as myMDteam.

Support groups are often organized by hospitals, care centers, and nonprofit organizations. They may welcome family members, caregivers, and friends who want to better understand the needs of someone with DMD. There are also support groups specifically for family members and caregivers of people with DMD.

Here are some of the reasons you may want to participate in a support group for DMD.

1. Support Groups Help People Feel Less Isolated

Support groups can help you feel less alone as someone living with DMD or as a caregiver. They can create a sense of community that can be hard to find among people who don’t face the same challenges.

Social isolation is common for people with DMD. A study published in the journal Advances in Therapy found that young men with DMD often feel left out of social activities as their peers start working and living more independent lives. A support group for people with DMD can help reduce feelings of isolation and provide opportunities to make new friends and build a support network.

Family members and caregivers of people with DMD also often feel isolated. Caregiving can be overwhelming and time-consuming for parents and other caregivers of people with DMD. Support groups offer caregivers a chance to connect with others who understand their daily struggles and provide much-needed social support.

2. You Can Express Your Feelings Openly in a Support Group

Living with DMD or caring for someone with the condition can bring up many difficult emotions. It’s important to have a place to share how you feel. Support groups provide a place to express your emotions and offer emotional support and coping strategies.

As people with DMD live longer and seek more independent lives as young adults, emotional support becomes even more important. Support groups allow you to openly share your feelings with others with DMD who are facing similar challenges.

Caregivers also need a place to express their emotions. Research in the European Journal of Paediatric Neurology found that parents of children with DMD often struggle with feelings of guilt, depression, anxiety, stress, and worries about their ability to support their children emotionally. Many parents often feel distressed about their children’s social isolation as well. Support groups can help you process these feelings with other parents who truly understand what you’re going through.

3. Support Groups Can Offer Useful Information

Support groups can be a great source of helpful information and resources. Some focus on sharing practical tips and knowledge to improve the care and well-being of people with DMD. Others provide useful advice through casual conversations with members of the support group.

Either way, support groups can help you learn about resources that may benefit you or your child, such as:

• Navigating medical care and the healthcare system
• Finding medical equipment
• Learning about clinical trials for new treatments
• Accessing financial assistance
• Taking care of your home
• Connecting with genetic counselors and genetic testing
• Attending educational events or reading articles to learn more about DMD

You may also have valuable ideas, tips, or resources on DMD to share. Support groups can be a great place to exchange knowledge, ask questions, and connect with others who have experience with DMD.

4. A DMD Support Group Can Help Validate Your Experiences

While friends and extended family members may offer support, it’s not the same as sharing experiences, feelings, and practical concerns with people who are on their DMD journey. Sometimes it may seem like other people don’t fully understand the daily struggles, mental health challenges, or even the small victories that mean so much to you.

In a support group, having your DMD experiences validated by others who truly “get it” can be a great relief. It can give you a sense of belonging that might have been hard to find elsewhere.

5. A Support Group Can Help Improve Your Outlook

Connecting with others in the Duchenne community can improve your outlook. Hearing how others have managed life with DMD or as a caregiver can be encouraging. With a more positive and hopeful mindset, your mental health may improve, and you might feel more open to resources that can help improve your or your child’s quality of life.

How To Find a Support Group

If you’re interested in getting involved in a DMD support group, here are some advocacy organizations that can help:

• The Muscular Dystrophy Association (MDA) Community Support Groups — Offers online support groups for adults with DMD and for parents and caregivers
• Parent Project Muscular Dystrophy (PPMD) — Provides online support groups and listings for local support groups for families with a child who has been newly diagnosed with DMD
• The Jett Foundation — Provides online support groups for parents of children with DMD
• Team Joseph — A nonprofit founded by a parent whose son was diagnosed with DMD

Talk to your doctor about the benefits of joining an online support group such as myMDteam or an in-person support group. Your healthcare providers, healthcare team, or muscular dystrophy care center may also know about local support groups.

If you can’t find a DMD-specific support group, consider joining one with a broader focus, such as groups for neuromuscular disease or caregivers of children with disabilities. These groups can offer many of the same benefits as a group specifically focused on DMD.

Talk With Others Who Understand

On myMDteam, the social network for people living with muscular dystrophy and their loved ones, members come together to ask questions, give advice, and share their stories with others who understand life with muscular dystrophy.

Have you participated in a support group for Duchenne muscular dystrophy? What benefits did you find? Share your experience in the comments below, post on your Activities page, or connect with like-minded members in Groups.