Duchenne muscular dystrophy (DMD) is a complex condition. It’s also rare, which means not a lot of other kids have it. One of the best things you can do to support yourself, your child, and your family is to build connections with others who understand what you’re going through.
Why Connecting With Others in the DMD Community Is Important
A strong social network can help buffer some of the stress that comes with long-term caregiving. But most DMD caregivers don’t have any close friends or family members with children who have the same or a similar diagnosis.
By connecting with other DMD caregivers, you'll feel more at ease and less isolated. It helps to talk to people who understand your unique challenges. For example, you can go over the ins and outs of running errands or getting to doctor visits with a child who uses a wheelchair.
When you build your DMD network, you can:
- Bounce ideas off other caregivers
- Discuss side effects from long-term steroids or other treatments
- Learn how to get (and pay for) adaptive equipment like accessible vans, lifts, or wheelchairs
- Find DMD resources in your area
Your DMD community can also share:
- Ways to manage physical and emotional symptoms of DMD
- Tips on how to find and use respite care or other home care services
- Advice on finding doctors, occupational therapists, or other specialists
- The best tools and equipment to help kids with DMD get around easier at home
How to Find DMD Support Groups and Resources
You might start by asking your child’s doctor, social worker, or nurse navigator. They may be able to connect you right away with support groups or other caregivers in your area. But many families affected by DMD find like-minded folks through Facebook groups or other websites.
Some national groups that offer resources geared toward people with DMD and their families are:
Parent Project Muscular Dystrophy. PPMD offers online forums and family outreach programs for people and families affected by DMD or Becker muscular dystrophy.
Through PPMD’s Community Forum, and Connect and Sibs Connect programs, you can:
- Learn more about local resources for families affected by DMD
- Meet with other DMD caregivers in person or online
- Join discussion groups and read blogs
- Connect siblings of people with DMD (ages 16 and older)
- Find virtual or in-person events
Visit the PPMD website to learn how to connect with local PPMD groups in your area or through Facebook groups. You can also email [email protected] or call 800-714-5437 to find out more.
Muscular Dystrophy Association. For one-on-one help, contact the National MDA Resource Center. You can reach someone by phone Monday-Friday, from 9 a.m. to 5 p.m. CT, at 833-275-6321. Or email [email protected].
Visit the MDA website to find ways to connect with other families affected by muscular dystrophy. You’ll find info about:
- Virtual educational sessions and seminars
- Online webinars
- Live family panel discussions
- Facebook live sessions
There’s also the MDA’s yearly summer camp. It’s free and takes place online or in person around the country. The one-week camps offer kids with neuromuscular diseases a chance to play and learn life skills alongside other children with a similar diagnosis.
Visit the Muscular Dystrophy Association website or email [email protected] to learn more.
CureDuchenne. The nonprofit group’s CureDuchenne Cares program offers a variety of meetups throughout the year. The events are free and open to anyone who wants to learn more about how to manage life with DMD or to connect with others going through a similar experience.
Visit the CureDuchenne website to learn more about how and when to sign up for:
- Virtual community events
- Webinars that offer Q&A sessions with DMD specialists
- One-day workshops where caregivers can learn more about DMD care
- Two-hour info sessions specifically for people with DMD and their caregivers
The CureDuchenne 1:1 program offers one-on-one meetings with other DMD parents, experts, or a family support resource coordinator. Email [email protected] to find out more.
CureDuchenne also helped fund the DuchenneXchange app, which connects families, researchers, doctors, and people who live with DMD.
Tips to Bring Awareness to Your Family and Community
You may feel like you don't know how to talk about DMD with other people. But it’s important to give your friends, family, and other community members a chance to understand and support you and your child.
If you’re not sure how to get the conversation started, speak with a social worker or neuromuscular nurse navigator or coordinator. These health professionals can guide you through sensitive subject matters and give you tips on how to talk about DMD in your community.
It’s hard to predict how people will react to serious health news. And you’ll probably need to give folks a chance to come to terms with the diagnosis in their own time. But when sharing info about DMD, you may want to:
- Write down exactly what you want to say.
- Print off info from trusted websites.
- Ask your child whether it’s OK to talk to their siblings, friends, and peers about their DMD.
- Give people real-life examples of how DMD affects your child on a daily basis.
- Meet with your child’s teachers early and often about special assistance with school.
You may also want to bring concerned loved ones to your child’s doctor appointments. (Get the OK from your kiddo first.) For more information on how to talk to your community about DMD, visit the websites of Parent Project Muscular Dystrophy and the Muscular Dystrophy Association.
Photo Credit: vadimguzhva / Getty Images
Kristen Alianello, registered nurse; neuromuscular nurse coordinator, Lurie Children’s Hospital.
Cristian Ionita, MD, associate professor of clinical pediatrics (neurology) and director, Pediatric Neurology Residency Program, Yale School of Medicine; co-director Yale/MDA Pediatric Neuromuscular Clinic.
Muscle & Nerve: “Burden, professional support, and social network in families of children and young adults with muscular dystrophies.”
Journal of Patient-Reported Outcomes: “Drivers of caregiver impact in Duchenne muscular dystrophy: a cohort study.”
CDC: “Resources for Patients and Families.”
Muscular Dystrophy Association: “Community Events,” “MDA Summer Camp,” “A Guide for Families.”
Parent Project Muscular Dystrophy: “Community Forum,” “Find a Local PPMD Connect Group,” “Adjusting to the Diagnosis.”
CureDuchenne: “CureDuchenne Cares,” “Dedicated Online Platform DuchenneXchnage.org Launches to Unite, Support, and Educate Duchenne Community.”