Duchenne muscular dystrophy (DMD) is most commonly diagnosed in boys aged 2 to 5 years old. As patients grow into their teens and early adulthood, symptoms worsen as muscle weakness impacts mobility, as well as cardiac and pulmonary function. Managing disease progression and a transition to adulthood can be challenging, but planning ahead to support independence and quality of life can help.
What is DMD?
Duchenne muscular dystrophy (DMD) is a genetic disorder which causes the progressive weakening of muscles, primarily in boys. The resulting loss of muscle function affects the body’s overall muscle strength, the heart muscle and the respiratory system. There is no cure for DMD, and symptoms impact independence and quality of life as the disease worsens.
Challenges of teenagers with DMD
For children living with DMD, the transition to the challenges of adulthood starts in the teenage years, when muscle weakness worsens. They often lose the ability to walk in their early teens and rely on a wheelchair to move around.
Read more about the prognosis of DMD
After the age of 18, symptoms of cardiomyopathy or heart failure are common as the heart muscle weakens. Symptoms may include shortness of breath, fatigue, dizziness, fainting, swelling of the legs and ankles and chest pain.
Reduced respiratory function can lead to serious respiratory infections and pneumonia. Weakening of the diaphragm muscles causes difficulty taking deep breaths, coughing and breathing comfortably overnight, leading to sleep apnea.
Preparing for adulthood with Duchenne
A variety of assistive devices are available to help improve autonomy in people living with DMD as they progress towards adulthood. Practical solutions and technological advances can provide independence in movement and in carrying out everyday tasks.
- Mobility: Lightweight, easily maneuverable wheelchairs with the option of voice or breath control, ramps, chair lifts and stair lifts can significantly help with mobility limitations.
- Smart technology: Voice- or breath-operated technology can be used to control everything from phones, lights, TV, music, blinds, air conditioning and heating to induction cooktops.
Boosting a sense of independence can be very beneficial for mental health, leading to enhanced well-being. However, DMD can also impact emotional and psychosocial well-being.
The sadness and frustration associated with living with DMD as a young adult can be difficult to manage. Grief over lost function and physical limitations can lead to self-pity and anger.
- Communication: Speaking openly about the emotional toll of DMD is a healthy approach to learning to manage the associated frustration.
- Therapy: Having the support of friends and family is important, but professional help from a therapist should be encouraged.
Growing up is a complicated journey for everyone, but that’s especially true for those with DMD. A structured plan that addresses quality of life, independence and well-being is key to preparing for the transition to adulthood with Duchenne.
Sign up here to get the latest news, perspectives, and information about DMD sent directly to your inbox. Registration is free and only takes a minute.
