Support through physical therapy, respiratory therapy, and assistive devices
There are various measures that make everyday life easier for those affected.
- Physical therapy exercises. They are an important therapeutic measure to counter progressive muscle wasting. These include, for example, passive stretching exercises designed to counteract the shortening of muscles, tendons, and ligaments. Such shortening can, in fact, cause joints to become increasingly immobile and eventually stiff.
- Breathing exercises. To improve breathing capacity, the therapist can teach the affected person appropriate breathing exercises. For example, simply blowing out candles can help train the respiratory muscles during inhalation and exhalation. Playing the flute or singing in a choir can also be helpful. In the advanced stages of the disease, many patients require mechanical ventilation.
- Depending on the individual’s needs, assistive devices such as orthopedic shoes or a brace (to correct poor posture) may also be considered for Duchenne muscular dystrophy. If you’re having increasing difficulty standing, a standing board or a standing chair can be helpful.
Surgical Procedures for Duchenne Muscular Dystrophy
If joints have become stiff as a result of shortened muscles, tendons, and ligaments, this can often be corrected surgically. In cases of scoliosis, too, surgery is performed as early as possible to prevent the spine from curving further. Severe scoliosis can, in fact, be very painful and significantly impair breathing.
Duchenne Muscular Dystrophy: Long-Term Ventilation
As muscular dystrophy progresses, the weakening of the respiratory muscles leads to chronic respiratory failure, which first manifests itself during sleep and later causes shortness of breath during the day as well. Starting the nightly “noninvasive” ventilation via a mask in a timely manner is also essential for preventing daytime sleepiness, difficulty concentrating, and frequent respiratory infections. As the condition progresses, ventilation will become necessary even during the day, up to 24 hours a day. Long-term mechanical ventilation is the most important treatment for Duchenne muscular dystrophy in terms of improving quality of life and survival. It has led to an increase in life expectancy from 15–20 years to over 35 years today. Please discuss with us as early as possible any symptoms that may indicate a sleep-related breathing disorder, as well as the planned initiation of ventilation.
Duchenne Muscular Dystrophy: Medications
To date, there is no medication that can stop or cure the disease. However, some active ingredients can significantly improve the quality of life for those affected. These include, for example:
- Corticosteroids ( “cortisone”). According to studies, they can delay the loss of muscle strength by one to two years. Parents of affected children should discuss the possible side effects and risks of cortisone therapy (such as weight gain, growth delays, etc.) with us. Corticosteroids are generally no longer used in adults.
- ACE inhibitors. Boys with Duchenne muscular dystrophy who have heart muscle disease (cardiomyopathy) are prescribed ACE inhibitors. These active ingredients lower blood pressure, thereby making it easier for the heart muscle to pump blood. If necessary, we prescribe additional heart failure medications (e.g., beta-blockers) as well as diuretics to provide further support for the weakened heart.
Duchenne Muscular Dystrophy: Here's What You Can Do!
People with Duchenne muscular dystrophy and their families can provide valuable support for the treatment. Here are a few examples:
- Exercise: People with this condition should get enough exercise, especially in the early stages of the disease. It’s best to discuss with us what type of activity and to what extent it makes sense in each individual case. For example, many children enjoy swimming because they find moving around in warm water soothing.
- Stretching exercises: The physical therapist can show your child and you, as parents, exercises that you can do on your own. For example, regular stretching exercises are recommended. It may very well be that your child lies on his or her stomach while playing or reading every day. This helps prevent shortening and stiffness in the hip joint area.
Chronic conditions such as Duchenne muscular dystrophy are often very difficult for those affected and their families. In that case, support groups can be a great source of support. Boys with Duchenne can connect with others who have the same condition there. And family members can talk to one another about their concerns, fears, and the challenges of daily life with Duchenne muscular dystrophy.
