MDA Clinic

The UofL Physicians – MDA Clinic helps improve the care of children with neuromuscular diseases by providing them and their families with highly specialized and convenient medical care in one, centralized location. 

Neuromuscular diseases are rare acquired or inherited (genetic) conditions that affect some part of the neuromuscular system such as the:

  • Muscles
  • Peripheral motor nerves (in arms, legs, neck and face)
  • Neuromuscular junction where the nerves and muscles meet
  • Muscle-controlling nerve cells (motor neurons) in the spinal cord

The clinic is a partnership between UofL Physicians and the Muscular Dystrophy Association where patients can see a variety of knowledgeable specialists and therapists related to their care, including those in neurology, cardiology and pulmonology, in one single visit. This multidisciplinary approach allows us to deliver the highest-quality care by efficiently recommending treatment, therapies and adaptive equipment to improve function and well-being.

The Louisville clinic is one of 200 MDA specialized clinics nationwide, which adhere to a strict standard of care guidelines for treating children and adults with muscle diseases. MDA clinics are at the forefront of research and treatment methods. Most are located in academic settings, such as the University of Louisville, and some clinics, like ours, also serve as sites for clinical trials of the latest experimental therapies.

The affiliation with the MDA also allows patients and families to benefit from the MDA’s range of support services and resources, including education.  The MDA is a nonprofit agency dedicated to curing muscular dystrophy, ALS and related diseases by funding worldwide research. It also provides comprehensive health care and support services, advocacy and education. Learn more about what the MDA offers here: www.mda.org.

 

The MDA covers over 43 different forms of neuromuscular diseases, including Duchenne muscular dystrophy, spinal muscular atrophy and Charcot-Marie-Tooth disease. For a complete list of diseases covered, click here.

Muscular dystrophy refers to a group of genetic muscle diseases marked by progressive degeneration of voluntary muscles. More than a million people in the United States are affected by some form of neuromuscular disease, and about 40 percent of them are under age 18. Neuromuscular diseases are rare acquired or inherited (genetic) conditions that affect some part of the neuromuscular system, and vary in genetic basis, age of onset, rate of progression and muscles affected. 

All neuromuscular diseases are progressive in nature, and all result in muscle weakness and fatigue, though they vary in rate of progression and muscles affected. Some diseases are present at birth, some manifest in childhood and others have an adult onset. 

The disease may be passed down through family genetic lines, and in some cases, a patient may have an affected sibling, parent or other relative. At other times, there isn’t a family history and the disease is the result of a spontaneous genetic mutation, an abnormal immune response or an unknown cause.

Life expectancy varies by disease and severity, from very short to normal length. Heart and respiratory problems, which are secondary effects of muscle deterioration, often are the cause of death.

The clinic is held once a month in a child-friendly environment. Visits last from two to three hours to allow time for a child to see all applicable specialists. During the visit, specialists work together to develop an individualized treatment plan for each patient. 

As neuromuscular diseases can present in a variety of ways and at different ages, diagnostic examinations and laboratory tests will be performed to gather information and identify other problems. Many neuromuscular diseases can be quickly and accurately identified through a clinical examination and laboratory testing, such as tests for muscle strength and appearance and the amount of muscle proteins present in the blood.  Some, however, can be more difficult to diagnose. A definitive diagnosis may require waiting until the diseases has progressed to a stage that is unique to that disorder.

During the visit, the specialists a patient may see include a:

  • Neurologist
  • Pulmonologist
  • Cardiologist
  • Orthopedist
  • Physical therapist
  • Occupational therapist
  • Physiatrist
  • Orthotist
  • Clinical nutritionist
  • Speech/language pathologist
  • Psychologist
  • Nurse educator and case manager
  • Dietician
  • Genetic counselor

Patients and their families may also see a health care social worker, who can help families with their daily challenges related to the disease.

An MDA health care service coordinator also will be present during the clinic to answer questions, distribute MDA educational materials, coordinate any MDA services you may require and assist with community resource referrals.

We also offer support groups for families.

Some of the treatments and services we offer are:

  • Physical therapy
  • Respiratory therapy 
  • Speech therapy
  • Diagnostic testing for neuromuscular disease
  • Motor and sensory nerve conduction
  • Needle electromyography
  • Quantitative sensory testing
  • Autonomic testing
  • Genetic testing for families to determine whether other family members might be at risk 

Physicians in this practice may not see patients at all locations listed below. For details, please call the appointment line for the location you are interested in visiting.

The clinic is held once a month. Please call UofL Physicians - Child Neurology at 502-588-3650 for details.

After hours (after 5 p.m. and on weekends), please call Norton Children's Hospital at 502-629-6000.

Click here to view a map of all UofL Physicians pediatric practices located downtown.

 

Offices and Clinics

  • UofL Physicians - Child Neurology (Children's Hospital Foundation Building)
    601 S. Floyd St.
    Suite 500
    Louisville, Kentucky 40202
    502-588-3650
    View Google Map

Hospital Affiliations

  • Norton Children’s Hospital

Patients can see a variety of knowledgeable specialists and therapists related to their care, including those in neurology, cardiology and pulmonology, in one single visit. This multidisciplinary approach allows us to deliver the highest-quality care by efficiently recommending treatment, therapies and adaptive equipment to improve function and well-being.

Next Steps

For more information or to make an appointment,
call 502-588-6000