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If you're like most Americans, you're familiar with the term "muscular
dystrophy" but not quite sure what it involves. Knowing more about
the disorder could help you or someone you know.
"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.
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.
Article Source: articledashboard.com:
Understanding Muscular Dystrophy
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