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Roussy-Levy Syndrome, also known as hereditary areflexic dystasia, affects the peripheral nervous system. Distinctive characteristics of this variant of CMT include tremors (rhythmic shaking) in the hands and arms and unsteadiness of gait (gait ataxia).
Coping With Grief Over Health Losses
When I first received a diagnosis with a neuromuscular disease, I went through a variety of emotions. Looking back, I recognize these emotions as part of the grieving process.
U.S. Legislative Update for Neuromuscular Diseases
Recently, important legislation affecting the neuromuscular disease community in the U.S. was passed by the House and Senate, and signed into law by the President. As members of this community, it is important to remain informed and to act in support of any legislation that is important to you.
Newborn Screening and Neuromuscular Disease
As diagnosis and treatment protocols become more advanced, newborn screening will likely become increasingly possible for neuromuscular disease. As these advances are made, ethical and practical decisions regarding newborn screening for neuromuscular disease will need to be made.
Newborn Screening Saves Lives Reauthorization Act
The Newborn Screening Saves Lives Reauthorization Act (H.R. 1281/S. 1417) was recently passed into law. This Act reauthorizes federal programs related to newborn screening.
TSA Cares Helpline
The Transportation Security Administration (TSA)provides a helpline dedicated to helping travelers with disabling conditions or medical issues called TSA Cares, created to answer concerns regarding security screening policies and procedures related to individuals with medical needs and disability.
Is Charcot Foot the Same as Charcot Marie Tooth?
Although Charcot Foot, also called Charcot’s arthropathy or neuroarthropathy, has some of the same symptoms as Charcot Marie Tooth, these two diseases have different causes. Careful diagnosis is required to receive the proper care for these two distinct diseases.
Balance, Darkness, and CMT
The sudden darkness in the movie theater caught me off guard, and, off balance, I could not walk. I found that I had to wait until my eyes adjusted to the dim light enough to aid my balance to begin walking again. Soon, however, I was headed up the steps and to my seat to enjoy the movie.
The Sound of a Wild Snail Eating Book Review
The Sound of a Wild Snail Eating, by Elisabeth Tova Bailey, recounts Ms. Bailey's observations of and relationship with a snail. A friend brought her the snail while she was incapacitated by a mysterious neuromuscular disease that left her unable to walk, sit, or care for herself.
Keeping a Gratitude Journal
Give keeping a gratitude journal a try! You might just find that keeping a gratitude journal becomes an important tool for maintaining and increasing your joy and happiness.
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