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Understanding Muscular Dystrophy
"Muscular dystrophy" is a broad term for gene-related disorders that weaken muscles throughout the body. Of the more than 20 forms of muscular dystrophy, Duchenne muscular dystrophy (DMD) is perhaps the most common. Duchenne muscular dystrophy affects all races and cultures; however, it is found primarily in boys, as it is manifested on the 'x' chromosome. DMD remains the most common lethal genetic disorder diagnosed during childhood. To date, there is no cure. The progression of DMD leads to many physical symptoms that generally affect different portions of the body, including the back, legs, feet, joints and tendons. During the teen years, those with DMD typically lose their ability to walk and, later, the use of their arms. They also develop heart and respiratory complications, often leading to respiratory failure and death in their early to mid-20s. Duchenne muscular dystrophy affects 20,000 children worldwide who are born with it each year, and their families and friends. One Story In 1995, Pat Furlong lost her son, Christopher, to DMD. In 1996, she lost her second son, Patrick, to the same disorder. When Christopher and Patrick were born, little was known about the disorder and few, if any, resources were available for parents. During the 1980s, doctors made important genetic discoveries but did not advance any treatments and had little funding to continue further DMD research. Bereft and angry, Furlong decided to get involved in her sons' disorder. With the help of other parents affected by DMD, she formed Parent Project Muscular Dystrophy (PPMD) in 1994. The launch of this grassroots organization spawned lobbying efforts, research centers and awareness campaigns. PPMD also initiated a national and constantly evolving community of parents and friends affected by DMD. As the organization matured, so did research on the disorder. With mounting action and developments, Furlong began to feel hopeful that a cure might be possible. A dozen years after she founded PPMD, Furlong has seen exponential progress. A potential treatment for DMD has successfully completed the second phase of its clinical trial; the MD Cares Act, mandating further federal research on muscular dystrophy, was passed into law; and a global DMD community is forming with the recent launch of the Duchenne Research Collaborative International, a coalition of PPMD and three other DMD-focused organizations. Furlong and the parents who joined her take pride in catapulting this disorder into the public realm. She likens DMD to where arthritis was 10 years ago: large demand for a treatment but little awareness or knowledge of the disorder. Although it will probably still take many years until there is a cure for Duchenne muscular dystrophy, Furlong is certain that one day there will be an effective treatment. Develop Your DMD Awareness Diagnosis of Duchenne muscular dystrophy is often delayed because parents and physicians do not recognize characteristic signs of muscle weakness. To identify DMD, look for a combination of these traits: • Delay in reaching milestones, such as walking • Inability to jump or run • Difficulty in climbing stairs or getting off the floor • Using hands to "walk" up his legs and complaints of "tired legs" • Enlarged calf muscles • Walking on his toes or with a wide gait. Article Directory: http://www.articledashboard.com To learn more about Parent Project Muscular Dystrophy, visit www.parentprojectmd.org or call 1-800-714-KIDS. Support is available for parents whose sons have DMD at www.parentprojectmd.org or 1-800-714-KIDS. |
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