Muscular Dystrophy

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Whether you’re newly diagnosed with muscular dystrophy or if you’ve lived with it for years, you’ll find complete care and support from University of Iowa Health Care.

We’re the only medical center in Iowa—and one of only a few in the Midwest— named an MDA Care Center by the Muscular Dystrophy Association.

This means we offer a model of care that helps people with muscular dystrophy live longer and live better. Our unique approach includes:

Team-based care that lets you see several providers in a single visit
Access to specialists who can treat complications associated with muscular dystrophy such as heart or lung problems
Opportunities to enroll in clinical trials and other muscular dystrophy research studies
Genetic testing and counseling services

Until there is a cure for muscular dystrophy, you can count on our team to help you improve your symptoms and your quality of life.

Muscular dystrophy types and symptoms

Muscular dystrophy is the name given to a group of disorders that cause muscle weakness and muscle loss or “wasting” (atrophy).

Each type of muscular dystrophy is caused by a different abnormal gene (gene mutation). These gene mutations, which can run in families, affect the way your body makes or uses muscle proteins.

Types of muscular dystrophy

It’s important to understand what type of muscular dystrophy you have. That’s because each kind starts at different ages, affects different muscle groups, and progresses at different rates.

UI Health Care treats all types of muscular dystrophy, including:

Becker muscular dystrophy

This type is usually diagnosed in teens or young adult males. It tends to affect the pelvis, upper arms, and upper legs, and its progression is relatively slow.

Congenital muscular dystrophy

This type is present at birth and causes joint problems along with muscle weakness. It progresses slowly but causes a shortened life span.

Distal muscular dystrophy

Symptoms usually develop in middle age and affect the hands, forearms, and lower legs.

Duchenne muscular dystrophy

This is mostly diagnosed in young boys (ages 2-6) and progresses rapidly. Patients usually need a wheelchair by the time they reach adolescence, and most develop heart and lung problems. UI Stead Family Children’s Hospital has been named a Certified Duchenne Care Center by Parent Project Muscular Dystrophy.

Emery-Dreifuss muscular dystrophy

Symptoms typically begin in late childhood or adolescence and affect the shoulders, upper arms, and shin muscles. Heart problems are also common.

Facioscapulohumeral muscular dystrophy (FSHD)

The age of onset for FSHD ranges from childhood to early adulthood. Symptoms affect the face muscles, shoulders, and upper arms.

Limb-Girdle muscular dystrophy

This type affects the hip and shoulder muscles first, and eventually causes heart and lung problems. Symptoms appear anywhere from late childhood to middle age. We’re one of only seven medical centers in the country chosen to participate in the Limb-Girdle Muscular Dystrophy Clinical Research Network.

Myotonic muscular dystrophy

The most common muscular dystrophy in adults, this type starts in the face, feet, hands, and neck. Symptoms tend to progress slowly over decades.

Oculopharyngeal muscular dystrophy

This kind affects muscles in the eyelids, face, and throat, causing swallowing problems and weight loss.

Muscular dystrophy symptoms

Everyone with muscular dystrophy has muscle weakness, and many also experience muscle atrophy. Your other symptoms will depend on which type you have and the muscles that are affected.

Common signs (and complications) include:

Breathing problems caused by weak respiratory muscles
Drooping eyelids or face muscles
Enlarged calves, caused by scar tissue building up in the calf muscles
Heart muscle problems (cardiomyopathy) that can lead to an irregular heartbeat (arrhythmia) or heart failure
Joint stiffness
Learning disabilities
Muscle pain
Spine curvature (scoliosis)
Trouble swallowing (dysphagia)
Trouble walking

Muscular dystrophy diagnosis

We use various tests to confirm whether you have muscular dystrophy. Depending on your symptoms, these may include:

A neurological examination to look for muscle weakness, muscle loss, and muscle or joint stiffness (contractures)
Blood tests to check for certain enzymes that are higher in people with muscular dystrophy
An electromyogram (EMG) and nerve conduction study to measure how well your muscles respond to nerve stimulation
Heart tests, such as an echocardiogram, that let us check your heart muscle structure and function
Imaging procedures, such as an ultrasound or MRI scan, that let us see muscle abnormalities and check for signs that muscle is being replaced with scar tissue
Lung function tests to evaluate your lung health
Neurogenetic testing to look for any gene mutations that are known to cause muscular dystrophy
A muscle biopsy to look for signs of disease or damage on a small piece of muscle removed from your body

Our team is skilled at distinguishing muscular dystrophy from other muscle disorders and identifying the type of muscular dystrophy you have.

Muscular dystrophy treatment from UI Health Care

So far, there isn’t a cure for muscular dystrophy. But with the right care, you may be able to delay your need for a wheelchair—and keep your heart and lungs healthier for longer.

UI Health Care offers all the treatments you might need to improve your symptoms or delay their progression. These include:

Mobility aids:

Orthopedic devices can help you move around more easily. These include foot or ankle braces, canes, walkers, and wheelchairs.

Occupational Therapy:

Teaches you easier ways to perform everyday tasks such as bathing, dressing, grooming, and cooking.

Physical therapy:

Helps you safely increase strength and flexibility, and improve balance or mobility.

Respiratory therapy:

Teaches you more efficient ways to breathe (to compensate for reduced lung function).

Medications:

Some drugs help improve muscle strength, prevent muscle spasms, or treat muscular dystrophy-related heart problems. Other, newer medicines—like those recently approved to treat Duchenne muscular dystrophy—help correct abnormalities caused by specific gene mutations.

Speech therapy:

Helps you improve your swallowing ability and reduce your risk of choking.

Surgery:

You may need orthopedic surgery to correct scoliosis or joint problems. You may also need heart surgery, such as pacemaker or ICD placement, to treat muscular-dystrophy related heart problems.

Iowa's only muscular dystrophy clinic

To make it easier for our adult patients to receive ongoing care, we offer a daylong muscular dystrophy clinic at our main campus in Iowa City. During your visit, you’ll see all the specialists involved in your care, all under one roof.

You can also expect:

An easy arrival: We offer convenient valet parking and, if needed, help getting to your exam room.
One-stop care: All of your providers will come to you, so you don’t need to find your way to multiple units.
Family participation: Since muscular dystrophy often runs in families, you may have a parent, sibling, or child with the disease. They are welcome to attend your appointments with you.
Research opportunities: Our research coordinators will tell you about any new or upcoming clinical trials for your type of muscular dystrophy.

Most of our patients attend this clinic once each year. We can also see you throughout the year as needed to address new or worsening symptoms.

A leader in muscular dystrophy research

Outside of the exam room, our neurologists are also researchers. We lead studies to improve our understanding of muscular dystrophy. And we help develop and evaluate new, potentially life-changing treatments.

Federally funded scientific studies

In recognition of our expertise, we’re among a handful of U.S. medical centers chosen to serve as a Wellstone Muscular Dystrophy Specialized Research Center (MDSRC).

Each MDSRC receives funding from the National Institutes of Health to conduct innovative muscular dystrophy research.

Our team is currently researching a rare group of muscular dystrophies (called dystroglycanopathies) linked to a type of protein (dystroglycan) found in the body.

Because we take part in research studies like these, our pediatric and adult patients are often among the first in the country to try the newest treatments for muscular dystrophy.

Nationally recognized muscular dystrophy care

Our myotonic dystrophy clinic has been named an MDA Care Center by the Muscular Dystrophy Association. This designation is only given to medical centers that offer team-based, research-driven care.

Cardiologist

Ferhaan

Ahmad

MD, PhD

Heart and Vascular

4.64 out of 5 (151 ratings)

Neurologist

Andrea

Swenson

MD

Neurology

4.74 out of 5 (779 ratings)

Neuropsychiatrist

Peggy

Nopoulos

MD

Neurology
Psychiatry

4.82 out of 5 (134 ratings)

Physical Therapist

Amy C.

Yotty

PT, DPT, NCS

Rehabilitation Therapies

Additional Team Members

Clinic Coordinator:

Laura Yahnke, MSN, RN, CCM

Social Work:

Lori Crosser, LISW, ACM

Need help finding a muscular dystrophy specialist?

We’ll connect you with an adult or pediatric neurologist who specializes in diagnosing and treating muscular dystrophy.

Call 1-319-356-2572

Muscular Dystrophy