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Muscular Dystrophy Advocacy Sheet

By EmpowHER

The most severe forms of Muscular Dystrophy (MD) typically occur in early childhood, but adults can develop MD in middle age, or in their senior years.

MD is an umbrella name covering some 30 different inherited muscle conditions in which muscle fibers are especially susceptible to damage, and progressively worsens with time. Most of the more common types of MD seem to be caused by a genetic deficiency of the muscle protein dystrophin.

Symptoms of MD may include chronic muscle weakness, apparent lack of coordination, progressive crippling resulting in fixations (contractures) of muscles around joints, and loss of mobility. The specific symptoms and indications of MD may vary depending on the type of MD that is present, age of onset, parts of the body affected, and how rapidly the disease progresses. Since the disease is primarily genetic, knowing family health history is imperative to help diagnose MD.

If you suspect you have MD or your child does, or if you have recently been diagnosed with a form of MD, here are some questions to ask your doctor:

  • What type of MD is this? Some of the many forms of MD include:

•    Becker’s muscular dystrophy
•    Duchenne’s muscular dystrophy
•    Emery-Dreifuss muscular dystrophy
•    Facioscapulohumeral muscular dystrophy
•    Limb-girdle muscular dystrophy
•    Myotonia congenital
•    Myotonic dystrophy

  • What tests are needed? Initially, your doctor will perform a general physical examination and medical history to determine the type of muscular dystrophy. Physical characteristics such as a curved spine (scoliosis) or low muscle tone (hypotonia) can indicate specific types of muscular dystrophy. Other types affect the heart muscle. A muscle biopsy can detect loss of muscle mass (wasting), and a buildup of fat and connective tissue that makes the muscle appear larger (pseudohypertrophy). A DNA blood test also may be able to confirm a diagnosis. Additional tests may include Electrocardiography (ECG), Electromyography (EMG), and Serum CPK. A disease state may alter the results of Aldolase, AST, Creatinine, LDH, and Myolobin (urine/serum) tests.
  • How is this form of MD treated? Treatment of MD will often include physical therapy, medications,  assistive devices (braces, walkers, wheelchairs, canes, and ventilator for cases where respiratory muscles become weakened), surgery, and vaccinations to avoid infections which may become problematic in advanced cases.
  • What are the treatment goals? There is no cure for MD. However, early detection and treatment can possibly help to slow down the progression of the disease.
  • What specialists will need to be seen? Your doctor can recommend appropriate specialists depending on the type of MD.
  • How can I connect with others dealing with this condition? There are many resources on the internet (like EmpowHER) to help cope with a diagnosis and day-to-day concerns that come with living with MD. Local resources may also help provide support.
  • What is the long-term outlook? Long-term prognosis depends heavily on the type of muscular dystrophy. All types progressively worsen, but the length of time can vary drastically. Duchenne MD typically is deadly, while other types can cause little disability and people affected can possibly live a normal lifespan.
  • What are the possible complications? Some complications may include:

•    Cardiomyopathy
•    Decreased ability and needing help caring for self
•    Decreased mobility
•    Joint fractures
•    Mental impairment
•    Respiratory failure
•    Scoliosis

  • Can MD be prevented? If MD runs in your family, and you plan to have children, genetic counseling can identify increased risk so you can make educated decisions. Pregnancy sonogram can detect muscular dystrophy with some degree of accuracy.

Do you have a different question about muscular dystrophy? Check out EmpowHER’s pages. Sign-up, join or start a group, share your story, connect with other women and feel EmpowHERed!

www.mayoclinic.com Muscular Dystrophy
www.health.google.com Muscular Dystrophy

Christine Jeffries has been a writer/editor for work and at heart for the past 15+ years following the achievement of her Bachelor of Arts degree in English and journalism.  She happily lives in a home of testosterone with her husband and two sons. Christine is interested in women’s health and promoting strong women. She started a women’s group in Phoenix and Kansas City that has been gathering monthly since 2002.

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