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INTRODUCTION
Denise Balon |
Dear Friends:
Myotonic muscular dystrophy (MMD)
has been a part of my family’s life for many years. My four
siblings and I have symptoms that began in our 30s, and we believe
the disease goes back at least two generations before us. Some
of my nieces and nephews are also affected.
Like many of you, we were surprised to learn that such a wide
range of symptoms — muscle weakness, involuntary clenching
of hands and jaw, swallowing problems, eye problems, heart disorders,
extreme fatigue and other difficulties — could be caused
by a form of muscular dystrophy. With correct information about
our disorder, we’re able to monitor and protect our health
to a great degree.
This pamphlet has been prepared to give you the basic knowledge
about MMD that you’ll need to make your life as enjoyable
and productive as possible. With this information, you or your
children can be prepared for changes to come and armed to minimize
many effects of the disease.
By understanding how the disease affects me in different ways,
I’ve been able to continue working as a nurse but in a less
physically demanding role. I take pains to keep my stress level
to a minimum and make sure I get plenty of sleep, because I’ve
learned that stress and fatigue will exacerbate my symptoms rapidly.
A pacemaker corrects the heart problems caused by my MMD.
I find that, with these precautions and forms of assistance,
there’s very little I can’t do at work or in my personal
life with my husband and extended family.
My sister and brothers have made similar adjustments to the effects
of MMD. My nieces and nephews showed symptoms in childhood, and
they’ve received expert medical guidance from the beginning
for symptoms that include learning disabilities.
From this pamphlet you’ll learn some encouraging things
about MMD: There are treatments and interventions for most of
the symptoms and difficulties that arise with the disease. And
MDA’s research program is constantly making strides toward
better treatments and a cure.
In the meantime, it’s good to know that people with disabilities
have more opportunities than ever before to develop and use their
abilities, as well as legal rights to equal employment opportunity
and access to public places. Federal law guarantees children with
physical and cognitive disabilities a public education with whatever
supports they need.
By far, my family’s greatest ally in living with MMD is
MDA. "MDA Is Here to Help You" introduces MDA's many services. As you face the challenges ahead,
please remember:
You're not alone.
Denise Balon
New Port Richey, Fla.
Facts About Myotonic Muscular Dystrophy
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