If you’re living with Duchenne muscular dystrophy (DMD), planning ahead can help support the success of future education, employment, and housing efforts.

Duchenne muscular dystrophy (DMD) is a severe and progressive genetic disorder characterized by muscle degeneration and weakness. Primarily affecting people assigned male at birth, DMD is caused by a mutation in the DMD gene, which carries instructions for making dystrophin, a protein essential to the structure and function of muscle fibers.

If you have a DMD diagnosis, changes in your physical ability can progress quickly. Many people with this condition use a wheelchair by age 12. With much of your care being handled by family and caretakers during childhood, it’s natural to wonder what will happen when you reach adulthood and start to make decisions for yourself.

Planning and discussing long-term care with your loved ones and doctors now can help you successfully transition to adulthood with the right support in place.

DMD is progressive, and you may face different health challenges in adulthood than you did during childhood. Although DMD primarily affects skeletal muscle, it can affect how your heart and lungs function, and you could experience a variety of respiratory or cardiovascular conditions in addition to mobility limitations.

Discussing what to expect medically during adulthood can help you focus on prevention strategies as soon as possible and can also teach you what warning signs and symptoms to watch for when you’re on your own. Planning in this way also helps you understand if you’ll need different medical specialists on your team and what routine screenings to plan for.

Knowing what physical changes can develop helps you plan for school and workplace accommodations and can help you determine what support, like mobility devices, you might need.

At age 18, you can make your own healthcare choices in most states. This means much of your care shifts from family-focused (decisions made by your caregivers) to patient-focused.

Being able to make your own healthcare choices comes with the additional responsibility of understanding the care you need and why you need it. This means being able to answer questions like:

  • What are my medical needs, and can I communicate them to others?
  • Which symptoms require immediate medical care?
  • What do I do in a medical emergency?
  • What are the names of my medications, and what are they used for?
  • How do I use and maintain my assistive devices?
  • Do I know how to contact my doctors?
  • Can I keep track of my appointments, therapies, and daily treatments on my own?
  • Do I know how to fill out my own medical forms?
  • Can I get to my appointments?

It’s OK if you don’t know the answer to some of these questions right now. That’s what planning ahead is for. Because privacy laws around medical care change when you turn 18, allowing your family members to be involved with your medical care now means they can show you the ropes.

If you’re concerned you won’t be able to oversee your own medical care in the future, setting up a power of attorney now allows a trusted caregiver to make those decisions for you.

The transition from childhood to adulthood in DMD is the perfect time to take time to find a care coordinator you trust and get along well with. Care coordinators are healthcare professionals who help patients, families, and healthcare teams manage the complexities of DMD care.

Your care coordinator can help you in adulthood with tasks like scheduling appointments, facilitating communication between your specialists, ensuring treatment adherence, and connecting you to support services like transportation and vocational training.

Living with DMD shouldn’t stop you from seeking higher education, getting a job, or living independently. It can pose some unique challenges in those circumstances, but with the right support in place, you can still pursue your long-term goals.

If you’re planning on going to school, calling them ahead of enrollment will provide insight into what supports they already have in place and which ones you’ll have to provide on your own. The same can be said for places of employment. Calling and discussing the job details, expectations, and what you’d need to have in place before starting sets you up for success.

During your teen years, you can work with your school guidance counselor and doctor to create a list of careers that may suit your needs best in adulthood. You may be able to join a vocational learning program during high school that helps build your skill set.

Some people with DMD continue to live with their families or caregivers, but many also want to enjoy the experience of being on their own as adults. Depending on the severity of DMD, fully independent living may not be possible, but that doesn’t mean you have to stay in the bedroom you grew up in.

Talk with your doctor and loved ones about your wishes. If living alone is possible using mobility devices, knowing what you need and which types of apartments or houses support independent living is important.

A zero-threshold home, for example, is friendly for people of all abilities because it has no steps or significant differences in thresholds between rooms or doorways. You may also want to look for a place with an open floor plan, rounded cabinet corners, lower-level appliances, and other mobility-friendly features.

If you need assisted living, there may also be housing situations available for you, but these may have limited availability and should be set up in advance. Your doctor or care coordinator can help you get in touch with these services.

DMD is a progressive condition that can sometimes make the transition between childhood and adulthood feel stressful.

Learning more about your diagnosis, understanding the level of care you might need as an adult, and setting up support for school, work, and home in advance can help.