Muscular Dystrophy
Get the specialized care you need to live a fuller life at Atrium Health Neurosciences Institute, home to one of the nation’s most comprehensive muscular dystrophy treatment programs.
Our designated Muscular Dystrophy Association (MDA) Care Center provides expertise that’s unmatched in the region. With personalized care and support, our team can help you maintain muscle strength, preserve mobility, cope with changes and maximize your well-being for as long as possible.
New patient appointments are by referral only. Ask your doctor if our program is right for you.
Learn more about muscular dystrophy care at Atrium Health Neurosciences Institute.
Why choose Atrium Health Neurosciences Institute?
- Region’s only MDA Care Center: As a designated MDA Care Center, we offer the highest level of muscular dystrophy care and research. Our clinic is the only certified MDA Care Center in the Charlotte region, and one of only 6 across the Carolinas.
- Experienced experts: Our fellowship-trained neuromuscular disease specialists have decades of experience treating muscular dystrophy. Depending on your needs, you and your neuromuscular doctor may also work with other subspecialty physicians to ensure you get complete care.
- Lifelong care: Muscular dystrophy requires ongoing care to help you achieve the best quality of life. Along with Atrium Health Levine Children’s, we treat patients of all ages – and your care is customized to meet your changing needs over time.
- Convenience and support: Every month, we have multidisciplinary clinic days that allow you to see several members of your care team during a single visit. And our providers are available to answer questions and offer guidance between appointments, so you can get the support you need quickly and easily.
- Leaders in muscular dystrophy research: We’re home to one of the Southeast’s most comprehensive research facilities for the study of degenerative neuromuscular diseases like muscular dystrophy. Here, we’re leading groundbreaking research that is transforming care for patients around the world.
Patient care – what we treat
As a certified MDA Care Center, we offer comprehensive care for all types of muscular dystrophy. Some of these include:
- Duchenne muscular dystrophy (DMD)
- Becker muscular dystrophy (BMD)
- Emery-Dreifuss muscular dystrophy (EDMD)
- Facioscapulohumeral muscular dystrophy (FSH, FSHD)
- Limb-girdle muscular dystrophy (LGMD)
- Myotonic dystrophy (DM)
- Congenital muscular dystrophy
- Spinal muscular atrophy (SMA)
Muscular dystrophy diagnosis and testing
Our neuromuscular disease specialists can determine whether you have muscular dystrophy and, if so, which type you have. An accurate diagnosis helps us provide the most effective treatments and services for your needs.
To make a diagnosis, your care team will ask about your health history and symptoms. We’ll also do a physical exam and may order additional screening tests.
These tests may include:
- Electromyogram (EMG): EMG is a test that measures the electrical activity of your nerves and muscles. Our EMG lab is accredited by the American Association of Neuromuscular and Electrodiagnostic Medicine for high-quality, safe care.
- Nerve conduction studies (NCS): During this test, also known as a nerve conduction velocity test, small electrodes on your skin stimulate the nerves with a low level of electricity. NCS is often done along with EMG.
- Blood tests: We may take a blood sample to check for a certain protein that can indicate muscular dystrophy.
- Genetic testing and counseling: Hereditary muscular dystrophies are caused by a gene abnormality that is passed down in families. We use genetic testing to check for these abnormalities and provide counseling to help you and your family navigate the results.
- Muscle biopsy: We may refer you to a surgeon to have a tiny piece of muscle taken for examination under a microscope. In some cases, this can help confirm a diagnosis of muscular dystrophy.
- Pulmonary function testing: Your pulmonary function is your ability to breathe. If you’re diagnosed with muscular dystrophy, you may need regular breathing tests to help your doctor determine if you need assistance with breathing or coughing.
- Electrocardiogram (ECG) and echocardiography: These tests are used to check heart function. When appropriate, we perform on-site cardiac testing in our pediatric clinic.
Muscular dystrophy treatments
At Atrium Health Neurosciences Institute, you’ll work with a team of experts to create a custom treatment plan. Our goal is to relieve your symptoms and slow the progress of disease.
Your treatment may include:
- Medication: Your care team can provide the latest and most effective medications to help manage your condition. Certain medications, such as steroids for DMD, can slow down muscle loss. Other medications can treat heart problems and other complications.
- Physical and occupational therapy: The goal of physical rehabilitation is to strengthen muscles and keep your joints flexible so you can move more easily. Our trained therapists help you maintain your functional abilities and find new ways to perform routine activities.
- Speech therapy: If you experience weakness in your facial or throat muscles, our speech pathologists can help you overcome challenges related to communication and swallowing.
- Respiratory therapy: Certain types of muscular dystrophy can affect the muscles you use to breathe. Our specialists can help prevent or delay breathing problems and provide devices that relieve breathing-related symptoms.
- Gene therapy: Most cases of muscular dystrophy are caused by gene mutations (changes). When appropriate, we may use gene therapy to correct a gene that isn’t working like it should.
- Assistive devices: Braces, walkers, wheelchairs and other adaptive equipment can support you in everyday movement and prevent injuries. Our providers can recommend devices for you and your home and teach you how to use them.
- Nutritional support: Our dietitian can help you create a personalized plan to address any issues you may have with your diet or nutrition.
- Support services: A dedicated social worker is available to patients and caregivers to provide emotional support, care navigation, connection to community resources and more.
Patient resources
Research
The Carolinas Neuromuscular/ALS-MDA Center, part of Atrium Health Neurosciences Institute, is the Southeast’s major comprehensive facility for the study and treatment of hereditary neuromuscular diseases such as muscular dystrophy.
The center has two translational research laboratories: the Carolinas Neuromuscular/ALS Research Laboratory and the McColl-Lockwood Laboratory for Muscular Dystrophy Research. Here, we’re leading groundbreaking research that is transforming care for patients around the world.
Find a clinical trial
Through our in-house neurosciences research, we give patients access to potentially breakthrough therapies.
Use our search tool to explore our current clinical trials. To learn more about our available studies, talk to your doctor.
Search clinical trialsFor referring providers
When you refer a patient to us, we keep you involved and up to date throughout their care. To make a referral, call our dedicated physician referral line at 704-468-0101 or send a fax to 704-468-0022.
Frequently asked questions
Muscular dystrophy is a group of genetic neuromuscular diseases that cause muscle weakness and loss of muscle tissue that is progressive (gets worse over time). Symptoms vary and can progress quickly or slowly depending on the specific form of muscular dystrophy. Eventually, muscle weakness can lead to problems with basic movements and everyday tasks.
Different types of muscular dystrophy may cause different symptoms, and the symptoms may worsen at different paces.
Some possible symptoms include:
- Muscle weakness and wasting (atrophy) that worsens over time
- Difficulty moving, such as problems climbing stairs or standing up from a chair
- A curved spine
- Abnormally large calves
- An enlarged heart
- Repeated falling
- Legs or arms turning inward in a fixed position
- Trouble breathing or swallowing
Our specialists have the expertise needed to accurately diagnose all types of muscular dystrophy, so you get the most effective treatment for your symptoms.
Muscular dystrophy is almost always diagnosed through a comprehensive neurological examination and a series of tests. Learn more about muscular dystrophy diagnosis.
Overall, the most common types of muscular dystrophy in childhood and early adulthood are:
- Duchenne muscular dystrophy (typically diagnosed in early childhood)
- Becker muscular dystrophy (typically diagnosed in teen to early adulthood)
The most common type of muscular dystrophy that is typically diagnosed during adulthood is myotonic muscular dystrophy.
As an MDA Care Center, we have a team of health care professionals who work together to deliver comprehensive care. Your care team will be led by a neurologist who specializes in muscular dystrophy and other neuromuscular diseases (also known as a neuromuscular neurologist).
Depending on your individual needs, your care team may also include:
- Specialized nurses
- Physical therapists
- Occupational therapists
- Respiratory therapists
- Speech pathologists
- Genetic counselors
- Dietitians
- Neuropsychologists
- Pulmonologists
- Gastroenterologists
- Social workers
- Adaptive equipment specialists
Atrium Health offers lifelong care for muscular dystrophy.
For children 17 and under, muscular dystrophy treatment is delivered by our multidisciplinary pediatric MDA Clinic led by Atrium Health Levine Children’s. And as children enter adulthood, they’re seamlessly transitioned to our adult muscular dystrophy program at Atrium Health Neurosciences Institute, which focuses on treating ages 18 and up.
Yes. Clinical trials give you more opportunities to find the right treatment for you, and Atrium Health’s neuromuscular research program is among the most comprehensive in the Southeast.
Search our current clinical trials. If you’re interested in participating in one of our studies, talk to your neuromuscular neurologist.
Location
Our designated MDA Care Center, The Carolinas Neuromuscular/ALS-MDA Center, is located at Atrium Health Neurology Specialty Care Charlotte.
Atrium Health Neurology Specialty Care Charlotte
A facility of Carolinas Medical Center
1010 Edgehill Road N.
Charlotte, NC 28207
Our providers
Meet some of the muscular dystrophy specialists at our adult MDA Care Center. To request an appointment, please call 704-468-0101.