Muscular Dystrophy Association (MDA) Clinic
Our Muscular Dystrophy Association (MDA) clinic gives you the extra therapies and attention you need to keep your care on track. You receive care from doctors, therapists and other specialists to prevent and treat common complications of muscular dystrophy. We provide personalized support to help you cope with changes in your health and daily activities.
Muscular Dystrophy Care at Cedars-Sinai: Why Choose Us?
Muscular dystrophy is not just one disease, but a group of inherited disorders that cause muscle weakness, making it difficult to move and breathe. There's no cure for muscular dystrophy.
But the team at the Cedars-Sinai MDA Clinic develops a personalized treatment plan to help you live easier with this condition. We are also investigating new therapies for muscular dystrophy. Our experts deliver the highest level of care, which is why our clinic is certified by the Muscular Dystrophy Association.
Highlights of our program include:
Our team includes experts in neurology, pulmonology and cardiology, who specialize in caring for people with muscular dystrophy. You have access to the best available treatments, including sophisticated breathing machines, if necessary. Our personalized care lowers your risk of complications. Meet our expert team.
Our clinic coordinator helps arrange appointments with multiple doctors and therapists in one visit. Our coordinator is also a genetic counselor who can discuss the genetics of neuromuscular disease with you and your family. We use this information to tailor your care experience and anticipate your future needs.
Types of Muscular Diseases We Treat
We deliver exceptional care for all muscular disease. Each condition has different genetic or acquired origins, presents unique difficulties and requires a personalized approach to care.
Muscular diseases we treat include:
- Congenital myopathy
- Distal myopathy
- Emery-Dreifuss muscular dystrophy
- Facioscapulohumeral muscular dystrophy
- Immune-mediated myopathies
- Inclusion body myopathies
- Limb-girdle muscular dystrophy
- Myasthenia gravis
- Mitochondrial myopathies
- Myotonic dystrophy
MDA Clinic Services
Your appointment at the MDA Clinic may take several hours to ensure you have time to meet with multiple specialists. Depending on your needs, you may need to visit our clinic every few months or every few years.
You may wish to request an appointment due to:
- Symptoms such as muscle weakness that are interfering with your daily life
- Advanced muscular dystrophy that requires care from multiple specialists
- Difficulty managing your changing needs and you need support
- Family history of muscular dystrophy and no diagnosis, but you are experiencing symptoms
Your care may include:
Muscular dystrophy treatment often includes therapies to make movement less painful and challenging.
At our MDA Clinic, you have access to:
- Physical therapists: These specialists gently stretch and massage tight muscles. They also guide you through exercises to loosen stiff joints, allowing movements to feel more natural.
- Occupational therapists: You'll learn methods for completing everyday tasks such as eating and bathing. Recommendations may include exercises to strengthen your jaw and equipment to help you get in and out of your bathtub.
- Orthotists: You may need devices (orthotics) to relieve pain and help position your body as naturally as possible. Orthotists are specialists who recommend the right orthotic for you and customize it to meet your needs.
- Social workers: These psychosocial-focused specialists help you define your support system and identify areas of unmet need. They can get you connected to community resources and provide check-ins for patients who are struggling with their medical care.
Cardiomyopathy is a frequent complication of muscular dystrophy. The heart tissue becomes thick or stiff, making the heart work harder than it should. Regular heart function testing and other assessments enable us to detect signs of cardiomyopathy.
We often identify problems before symptoms and complications occur, helping many people avoid heart failure. We may recommend medications that help heart muscles work more efficiently.
When appropriate, we work with the world-class cardiologists at the Smidt Heart Institute at Cedars-Sinai. Together, we coordinate care for patients with weakness and heart problems.
When the muscles that help you breathe become weak, it alters your lung's ability to exchange gases such as oxygen and carbon dioxide. This makes organs work harder than they should. You may also be at risk for respiratory infections and choking when muscle weakness prevents you from coughing or clearing your throat.
We assess breathing patterns and measure oxygen levels and then recommend treatments to lower your risk of respiratory failure. Your care may include equipment, such as a bilevel positive airway pressure (BiPAP) machine to help you breathe. We also teach you techniques for clearing mucus from your throat.
Representatives from the MDA help make your life a little easier with additional resources and opportunities. If you need a wheelchair, you may be able to receive a loaner from the MDA while you are waiting for insurance approval. The MDA also hosts social events for patients and families.