Treating 40+ Types of Muscular Dystrophy
The Muscular Dystrophy Clinic is sponsored by the Muscular Dystrophy Association and provides a multidisciplinary clinic serving the needs of adults and children with over 40 types of neuromuscular disorders. These disorders include all forms of muscular dystrophy, spinal muscle atrophy, and hereditary neuropathies like Charcot Marie Tooth disease.
The clinic is an MDA Care Center and recognized as a Center of Excellence for Duchenne Muscular Dystrophy by Parent Project Muscular Dystrophy.
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Conditions We Treat
We provide treatment and care for over 40 types of neuromuscular disorders for both children and adults. Conditions we treat include:
Preparing For Your Visit
If you have a neuromuscular disorder, many day-to-day activities can be overwhelming. Before your visit with us, we want to make sure you know what to expect. Please read how to prepare for your visit.
We also know that living with a neuromuscular disorder can be challenging. We've collected a list of resources to help patients, their families, and the community learn to successfully manage neuromuscular disorders.
Outreach Clinic: St. George, Utah
We hold an outreach Muscular Dystrophy clinic in St. George twice a year in the spring and fall. Please contact the number above to find out the specific dates of the outreach clinic and schedule an appointment.
What to Expect at Your First Appointment
During your initial evaluation visit, one of our neuromuscular specialists will examine you. Depending on your condition, diagnosis, and needs, one of our other specialists may examine you. These specialists can include:
- genetic counselors,
- physical therapists,
- social workers,
- respiratory therapists,
- orthotists (specialists who use devices to help keep injured parts of your body from moving),
- and seating specialists (professionals who help make sure you can sit in a wheel chair comfortably).
During your first visit, the MDA health care coordinator will also come and talk to you. He or she will be able to help you answer questions, coordinate services you need, and help you find community resource referrals.
For billing information, please contact the MDA Health Care Coordinator at 801-278-6200.
What to Bring to Your Appointment
On the day of your appointment, please remember to bring the following things:
- pre-authorization from your insurance (if needed),
- insurance card,
- any testing you have had at other facilities (such as an MRI, muscle biopsy slides, EMG reports, lab test results, physical and occupational therapy reports),
- a list of all the medications you take,
- and medical devices that use, like orthotics, your wheelchair, and respiratory equipment (i.e. Bi-Pap, C-Pap).
If the appointment is for your child, you may also find it useful to bring:
- Toys or games,
- and any items you will need for their care (stroller or diaper changing materials).
- If you need a wheelchair, you can find one at the front of our clinic. Our staff can also help get a wheelchair for you.
Many patients ask how many times they will need to return to our clinic for follow-up visits. The answer will depend on your diagnosis and what stage of progression your condition is in.
Clinical Trials & Research
Physicians in our neuromuscular program are deeply involved with research. Working alongside scientists, our neuromuscular specialists continue to find ways to discover and improve care and treatment for children and adults with different disorders. This advancement not only takes place in clinical settings but also in lab environments.
What Is a Clinical Trial?
A clinical trial is a research study where doctors, scientists, and researchers explore if a certain treatment or device is safe and effective. Please see our complete list of clinical trials.
The Utah Program for Inherited Neuromuscular Disorders (UPIN)
The Utah Program for Inherited Neuromuscular Disorders (UPIN) is a perfect example our physicians’ engagement in research. Learn more about UPIN’s research team, events, and current studies.