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Archive by Date | Archive by Article Title
Newborn Screening and Pompe Disease Update
Recently, the U.S. Discretionary Advisory Committee on Heritable Disorders in Newborns and Children recommended that Pompe disease be added to the Recommended Uniform Screening Panel.
Meeting a Shooting STAR
Recently, I met a Shooting STAR. No, not a shooting star of the celestial kind, but of the human kind - the winner of the Charcot Marie Tooth Association’s “I’m a Shooting STAR” 2013 contest, ten-year-old Allison.
Influenza and Neuromuscular Disease
Individuals with neuromuscular disease are considered to be at high risk for complications from influenza such as pneumonia or bronchitis, hospitalization, and more rarely, death. Make sure to talk to your physician about influenza and ask if you should receive vaccination against the flu.
Chiropractic Care and Neuromuscular Disease
Chiropractic care refers to a form of alternative medicine in which a chiropractor uses mechanical manipulation of the spine and other joints in the body. Chiropracty has been found to be useful in pain reduction for individuals with neuromuscular disease by researchers.
Disease Registries for Neuromuscular Disease
Disease registries have been formed to aid researchers searching for qualified individuals to participate as subjects in research protocols. Such research is needed to advance knowledge regarding the diagnosis and treatment of neuromuscular disease.
Medical Equipment Assistance Programs
Many individuals with neuromuscular disease require medical equipment. The cost of equipment can be prohibitive, however, and medical insurance does not always provide good coverage. Fortunately, there are programs available to assist individuals in obtaining the needed equipment.
Hammer Toes and Neuromuscular Disease
Technically referred to as hammer toe deformity, hammer toe is caused by contractures in the joints of the toe. Hammertoe is most common in the second toe, but can affect all of the four smaller toes. The affected toe or toes turn under into a claw-like position.
Neuromuscular Disease, Darkness, and Balance
As we waited for the fireworks to begin, my mind wandered to the walk back to our car. I wondered if I would trip or fall. It would be completely dark by then, and most of the walk would be over uneven ground.
Resilience - Bending Not Breaking
I wish to be resilient, like these pine trees. I have faced trials and difficulties in the past, and will continue to further problems in the future. These include (but certainly not limited to) diagnosis with the neuromuscular disease Charcot Marie Tooth. The nature of CMT requires resilience.
Kayaking with Neuromuscular Disease
According to the American Canoe Association (ACA) and United States Canoe Association (USCA), kayaking and other paddle sports can be adapted to accommodate individuals with a wide range of physical disabilities.
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