Support through physiotherapy, respiratory therapy and aids
There are various measures that make everyday life easier for those affected.
- Physiotherapeutic exercises. They are an important therapeutic measure against progressive muscle atrophy. This includes passive stretching exercises, for example, which are designed to counteract shortening of the muscles, tendons and ligaments. Such shortening can cause joints to become increasingly immobile and eventually stiff.
- Breathing exercises. To promote the ability to breathe, the therapist can show the affected person suitable breathing exercises. For example, blowing out candles can train the respiratory muscles when breathing in and out. Playing the flute or singing in a choir can also be helpful. In the advanced stages of the disease, many patients require mechanical respiratory support.
- Depending on requirements, Duchenne muscular dystrophy can also be treated with aids such as orthopaedic footwear or a corset (to prevent misalignment). If you find it increasingly difficult to stand, a standing board or upright chair can be helpful.
Surgical interventions for Duchenne muscular dystrophy
If joints have become stiff as a result of shortened muscles, tendons and ligaments, this can often be corrected surgically. Scoliosis is also operated on as early as possible so that the spine does not bend any further. A pronounced scoliosis can be very painful and significantly impede breathing.
Duchenne muscular dystrophy: long-term ventilation
In the course of muscular dystrophy, as respiratory muscle strength decreases, chronic respiratory failure occurs, which first manifests itself during sleep and later also leads to respiratory distress during the day. Timely initiation of so-called non-invasive ventilation via a mask at night is also essential to avoid daytime tiredness, concentration problems and frequent respiratory infections. Ventilation will also become necessary during the day up to 24 hours. Long-term ventilation is the most important therapy 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. Discuss with us any symptoms that indicate a breathing disorder during sleep and the planned initiation of ventilation at an early stage.
Duchenne muscular dystrophy: Medication
There is currently no medication that can stop or cure the disease. However, some active substances can significantly improve the quality of life of those affected. These include, for example:
- Corticosteroids (“cortisone”). According to studies, they can delay the diminishing 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 retardation, etc.) with us. Corticosteroids are generally no longer used in adults.
- ACE inhibitors. Duchenne boys with heart muscle disease (cardiomyopathy) receive so-called ACE inhibitors. These active ingredients lower blood pressure and make it easier for the heart muscle to pump. If necessary, we prescribe further heart failure medication (e.g. beta blockers) and also diuretics to provide additional support for the weakened heart.
Duchenne muscular dystrophy: What you can do yourself!
Duchenne patients and their relatives can provide valuable support for the therapy. Some examples:
- Exercise: Particularly in the early stages of the disease, those affected should get enough exercise. It is best to discuss with us which type of activity makes sense in each individual case and to what extent. For example, many children like to go swimming because they find moving in warm water soothing.
- Stretching exercises: The physiotherapist can show your child and you as parents exercises that you can do on your own. Regular stretching exercises, for example, are advisable. This may mean that your child lies on their stomach while playing or reading every day. This prevents shortening and stiffening in the hip joint area.
Chronic diseases such as Duchenne muscular dystrophy are often very stressful for those affected and their relatives. Self-help groups can then be a good source of support. Duchenne boys have contact with other Duchenne patients there. And relatives can talk to each other about worries, fears and challenges in everyday life with Duchenne muscular dystrophy.