Muscular Dystrophy

• What is Muscular Dystrophy?
• What Causes Muscular Dystrophy?
• How Is Muscular Dystrophy Treated?
• What to Expect When Your Child Is Diagnosed with Muscular Dystrophy
• Where can a parent get help?
• Links to additional information about Muscular Dystrophy

What Is Muscular Dystrophy?

Muscular Dystrophy is a broad term used to label gene-related disorders that affect muscles throughout the body. There are more than 20 specific genetic disorders considered to be Muscular Dystrophy. Most have the same result (a reduction in muscle strength due to weakening and deterioration) but these various types of Muscular Dystrophies are specific to different muscles in the body and different rates of degeneration.

Duchenne Muscular Dystrophy (DMD) is perhaps the most common of the Muscular Dystrophies in existence. Since it was first identified in the 1860's, DMD affects approximately 1 boy in every 3,000. Another type of Muscular Dystrophy is associated with DMD: Becker Muscular Dystrophy (BMD). Since its first diagnosis in the 1950's, Becker MD occurs in about 1 in 18,000 births and is considered to be a less severe form of DMD.

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What Causes Muscular Dystrophy?

Within our gene makeup, there is an important muscle protein called 'dystrophin' which is one of the largest genes found to date. Dystrophin acts as the glue that holds muscles together by maintaining the structure of muscle cells. Dystrophin is also believed to carry signals between the inside and outside of muscle fibers. Without dystrophin, muscles are not able to operate properly and will eventually suffer progressive damage.

The dystrophin gene is carried on the X-chromosome. Young men are therefore more susceptible to dystrophin damage because they have only one X-chromosome. When a boy is diagnosed with DMD, his body is not able to produce any dystrophin. In Becker MD, a distorted, over-sized version of dystrophin is generated. In either disorder, muscle cells within the body gradually weaken and eventually die, without fully functional dystrophin.

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How Is Muscular Dystrophy Treated?

• Physical Therapy
  The goals of physical therapy when treating MD are to prolong a child’s independence, slow progression of the complications, and improve quality of life. Therapy includes stretching, strengthening, training in use of adaptive and assistive equipment (such as wheelchairs, walkers, and home modifications), performance of daily functional activities, and breathing exercises.

  When it comes to stretching and strengthening, a combination of different therapies plays an important role in keeping the body as flexible, upright and mobile as possible. There are three main areas where contractures (loss of elasticity in the joints) are most prevalent: the Achilles tendons (in the ankle), knee flexors (hamstrings), and the IT bands (hip flexors).

  Exercise can help postpone or even prevent contractures in young men with DMD. Physical therapists may teach methods to gently take each joint and move it through its range of normal positions on a regular basis and help keep tendons from shortening prematurely. **Please consult a physical therapist before conducting these motion exercises as doing it incorrectly may do more harm than good.

  Physical therapists are also trained in the use of adaptive and assistive equipment which may be recommended during the course of treatment as well.

• Occupational Therapy
  While physical therapy focuses on allowing greater motion in the joints and prevention of other ailments, occupational therapy focuses on helping with specific tasks or activities. Through this type of therapy, young men with DMD can learn and re-learn self-care skills, improvement of arm and hand functioning, more effective use a computer, use the bathroom and other tasks of daily life.

  In some cases, children with DMD are also affected with cognitive or sensory issues, in that case an occupational therapist might also be able to recommend an appropriate OT program that may address some of those issues as well.

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What to Expect When Your Child Is Diagnosed with Muscular Dystrophy

Muscular dystrophy is a progressive disease. Depending on the type of muscular dystrophy affecting a child, it is very important for parents and family members to work closely with the healthcare team to minimize symptom progression as much as possible and optimize the child’s quality of life.

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Where can a parent get help?

If you have a concern about this diagnosis regarding your child, please contact your pediatrician. If your child’s doctor feels treatment is necessary, FAC’s physical therapists have extensive training in this area. Your physician can write out a prescription for evaluation and treatment, which can be faxed to our clinic: 651-738-9889.

Should you have any additional questions or concerns, please contact our front desk and ask to speak with a therapist.

Reference for this summary information provided by the Parent Project for Muscular Dystrophy Web Site: www.parentprojectmd.org

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Links to additional information about Muscular Dystrophy

• Online
  • http://www.mdausa.org -Muscular Dystrophy Association
  • http://www.wellstone-dc.org - Paul Wellstone Muscular Dystrophy Center
• Books
  • Muscular Dystrophy in Children: A Guide for Families by Irwin M Siegel
  • Muscular Dystrophy: the Facts by Alan E H Emery
• Camp Courage
  Camps for children with physical disabilities and clinical camps for children with speech/ hearing/ language impairments 763-520-0504
• Friendship Ventures (Camp friendship and Eden Wood Center)
  Friendship Venture’s two camps provide residential camping program for children and adults with developmental disabilities 1-800-450-8376
• Camp Winnebago
  Camps for children with developmental disabilities, siblings, and friends 507-724-2351
• Camp New Hope
  A camp for individuals with developmental and/ or physical disabilities ages 6 and older.

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