A DMD diagnosis can turn your world upside down, but you do not have to go through it alone. Family, friends, doctors, nurse, therapists and online communities can all serve as great pillars of support and comfort to fall back on in difficult times.
You can divide support networks into both formal and informal types—and you should make use of both:
People whose job or organization dedicates the to helping care for you and your child—like healthcare professionals, patient groups and professional organizations.
People who help out in a practical way and are there for you when you need them, like friends and family members.
Cure Duchenne partners with biotech and pharmaceutical companies, academic institutions, and other organizations to help find a cure for Duchenne muscular dystrophy.
PPMD is the largest, most comprehensive nonprofit organization in the United States focused on ending Duchenne muscular dystrophy through research, advocacy, care, and education.
Taking time to maintain your support network may be difficult, but it is critical.
It can be easy to start spending less time to loved ones and friends after a DMD diagnosis. You may find yourself busy taking care of your family, your priorities may change, or you may feel too emotionally drained to see other people. But maintaining contact with your current network and reaching out to other DMD families will:
Make an effort to catch up with family and friends on a regular basis. This does not always have to be face-to-face – a simple phone call or email will suffice.
Tip: If you are short on time, try writing out a ‘template’ email that contains all your family news. Later, you can personalize the content depending on who you are writing to.
Meeting with family and friends is a great way of taking a break and clearing your head. That is why it is important to make it a priority and not just an afterthought when you have free time.
Tip: Try using your phone or calendar to make social event planning part of your schedule. This way, your phone will automatically send you reminders, which will encourage you to make plans.
It can be hard to ask for or accept support, but loved ones, friends, co-workers, and neighbors often want to help. Let them know what you need, as well as how and when they can help.
Tip: Make a list of things that need doing. If someone asks to help, show them the list and let them choose what they can take off your hands.
It is important to remind your loved ones how important they are to you and how much you value their support. Make sure to express how you feel and do things that show how well you know and care for them.
Tip: When showing your gratitude, make sure to focus on the other person. Do something that they would perceive as caring. This could be treating them to lunch or a quick cup of coffee, writing a thank-you note, giving them an inspirational book or simply asking how they are.
Try to be open and honest about the way you are feeling and what you are going through. While it can be scary to say what is on your mind, it is also a pathway to a deeper connection with others.
Unsure about where to start? Ask your family doctor to refer you to a social worker or counselor and review the DMD support groups available here.
You are not alone facing the challenges of DMD. There will be a number of patient organizations and groups that you can go to for more information and support.
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Date of preparation: September 2022
Neuromuscular disorders affect the muscles and nerves, and most of the causes are genetic. This means they are either passed down through the family or caused by changes in an individual person’s genes.
Most neuromuscular disorders cause muscle weakness that worsens over time. Signs and symptoms of neuromuscular diseases can vary and may be mild, moderate, or severe.
Most often, when a child has a neuromuscular disease, they don’t grow and develop as fast as other children their age. They are often slow to start lifting their head, sitting, walking, and talking.
Treatment and supportive care may improve the symptoms of a neuromuscular disorder, increasing mobility and even life expectancy.
Muscular dystrophy is the term for a group of neuromuscular disorders that cause muscle weakness and muscle loss.
Duchenne muscular dystrophy (DMD) is a type of muscular dystrophy that causes muscle weakness that worsens over time. The progression and symptoms can vary from person to person.