You may not wear a cape, but if you’re a Duchenne muscular dystrophy (DMD) caregiver, you are certainly a superhero. You schedule health care appointments, navigate insurance claims, research treatment options, provide physical and emotional support, and so much more — every single day.

Whether you’re a parent, relative, friend, or paid home health aide, caring for someone with a progressive neuromuscular disease like DMD can be challenging and rewarding at the same time. To help you navigate the ins and outs of being a DMD caregiver, here are seven facts you should know about Duchenne muscular dystrophy.

1. Life Expectancies Are Increasing

A DMD diagnosis used to mean losing a family member when they were a child or adolescent. Thanks to clinical trials and advances in muscular dystrophy research, the life expectancy of people with DMD is increasing. Now it’s not uncommon for someone with DMD to live into their 20s or 30s, perhaps even graduating from college, starting a career, and achieving other milestones.

There’s no cure for DMD, a progressive disease that affects an estimated 1 in 3,500 male births worldwide, according to the National Human Genome Research Project. However, you can make the most of the time you have together with the right support and resources.

For example:

• Corticosteroids and other treatments can help control symptoms.
• Walkers and wheelchairs can make daily life easier.
• Support groups and therapists can give you a safe place to share your feelings.

Now it’s not uncommon for someone with DMD to live into their 20s or 30s, perhaps even graduating from college, starting a career, and achieving other milestones.

As research advances, life expectancies may continue to increase, and DMD resources and therapies will likely continue to improve. Whatever time you have together, try to look for moments of joy, gratitude, and hope along the way.

2. Knowledge Is Power

DMD is a genetic disorder caused by a mutation (change) to the dystrophin, or DMD, gene on the X chromosome. According to the Muscular Dystrophy Association, it’s extremely rare for females to develop DMD because of genetics. However, they can be carriers of the gene and experience only mild symptoms. Becker muscular dystrophy is caused by the same gene but is less common and tends to be less severe. There are more than 30 forms of muscular dystrophy.

Although doctors can offer advice and treatment options, caregivers and parents of children with DMD often benefit from doing their own research. The more you understand the disease and how it differs from other types of muscular dystrophy, the better equipped you’ll be to make informed decisions, participate in health care discussions, and prepare for disease progression.

When searching for information online, look for reputable sources. You can find information reviewed by medical experts at myDMDcenter and through trusted nonprofit organizations like the Muscular Dystrophy Association and CureDuchenne. If you have questions about something you read online, ask a medical professional for guidance.

3. It Takes a Village

Caring for someone with a progressive neuromuscular disorder like DMD is more manageable when you have help from family members and friends. While you may be used to caring for others, this is the time to accept love and support from those who want to care for you.

Make a list of tasks others can help with, and then ask for the help you need.

Here are some ways people can help:

• Picking up groceries
• Doing a load of laundry
• Cleaning the house
• Walking the dog
• Cooking a meal
• Researching clinical trials
• Filling out insurance paperwork
• Giving you a 30-minute break

Make a list of tasks others can help with, and then ask for the help you need. You’re not burdening family members and friends. You’re providing an opportunity for others to be involved and show you how much they care.

4. It Requires a Multidisciplinary Team

Some diseases can be treated by a single health care provider. DMD is not one of them. People with this progressive muscle disease benefit from multidisciplinary care. A team of specialists can address the physical health effects of DMD, such as muscle degeneration, loss of ambulation, respiratory and nutritional issues, as well as psychosocial concerns like learning disabilities, anxiety, and depression.

A primary care provider can help with referrals and building a care team, which will evolve over time. Some specialists will be involved early on, while others will join the team later.

A DMD care team often includes experts in:

• Pediatrics
• Neurology
• Neuromuscular disorders
• Cardiology
• Pulmonology
• Orthopedics
• Physical therapy
• Occupational therapy
• Speech therapy
• Mental health
• Nutrition

A care coordinator can also be a valuable team member, helping ensure smooth communication and information sharing. Finding specialists may take effort and coordination, but doing so can improve and sustain the health-related quality of life of someone living with DMD.

5. Some Organizations May Provide Financial Assistance

As someone with DMD transitions from ambulatory to nonambulatory, assistive devices like wheelchairs and motorized scooters become increasingly helpful. But these devices can be expensive. At the same time, some DMD caregivers take a leave of absence from work or reduce their hours to care for their loved ones. The combination of more expenses and less money can affect your mental health.

Don’t assume help is unavailable or that your family won’t qualify — you won’t know unless you ask.

If you’re worried about paying for assistive devices or other medical bills, these organizations or programs may be able to help:

• Muscular Dystrophy Family Foundation
• Parent Project Muscular Dystrophy
• The Duchenne Scholarship Program
• The Assistance Fund

• The Duchenne Family Assistance Program With Team Joseph

The child’s health care provider or a DMD patient navigator can also point you in the right direction. Don’t assume help is unavailable or that your family won’t qualify — you won’t know unless you ask. Also, start early. Apply for financial help before muscle weakness or loss of ambulation occurs. Staying ahead of disease progression can lower stress levels and ensure your loved one gets the necessary care and resources.

6. Self-Care Is Essential

On an airplane, a flight attendant will tell you to put on your oxygen mask before helping others. The same is true when you’re a DMD caregiver: To provide the care your loved one needs, you also have to take care of yourself. While it’s important for your loved one living with DMD to practice self-care, it’s equally important for you.

Consider these self-care tips:

• Go for a walk.
• Eat a healthy diet.
• Take breaks.
• Talk to a therapist or other mental health professional.
• Have coffee with a friend.
• Try meditation or yoga.
• Schedule time for activities you enjoy.
• Read a book.

If you regularly have trouble sleeping or experience other side effects that affect your quality of life, seek medical guidance — your well-being matters.

7. Support Groups Can Help

You can have the most incredible family members and friends supporting you on this journey and still feel like no one understands what you’re going through. If that sounds familiar, share your feelings at myDMDcenter and explore local and online support groups.

These organizations can help connect you to DMD support groups, family workshops, advocacy events, and other DMD caregiver resources:

• Parent Project Muscular Dystrophy
• Muscular Dystrophy Association
• CureDuchenne
• Jett Foundation
• JAR of Hope

You can also ask your child’s health care provider to recommend local support groups and other ways to connect with DMD caregivers in your area. Although DMD is a rare disease, you are not alone.

Talk With Others Who Understand

At myDMDcenter, the site for people with Duchenne muscular dystrophy and their loved ones, people come together to find community, gain a new understanding of DMD, and share their stories with others who can relate.

Are you a DMD caregiver? What tips do you have for others who are caring for someone living with DMD? Share your experiences in the comments below.