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Inherited Neuropathies Consortium
Registering with the ICN was quick and easy. If you have CMT, consider registering with the INC so that you can be part of the search for more effective treatments and cures for the inherited neuropathies.
The hobby of “letterboxing” has been growing. It involves hiking and navigational skills, with the fun of finding a “treasure” at the end of the hike. Trails can be selected by level of difficulty and wheelchair accessibility, making this a great hobby for individuals with neuromuscular disease.
Coping with Shin Splints
Also known as tibial stress syndrome or exercise related leg pain, shin splints are caused by stress to the tibia (the shinbone) and the connective tissue between the muscle and tibia. This causes pain in the front of the lower leg and sometimes mild swelling.
Fun and Games at the Neuromuscular Diseases Site
While dealing with neuromuscular disease is not fun, that does not mean that people with neuromuscular disease do not like to have fun! That is why, with the help of BellaOnline.com, I have created several entertaining word games and puzzles for you to play at the Neuromuscular Diseases site.
Friedreich’s ataxia (FA) refers to a form of neuromuscular disease in which ataxia is the primary symptom. Bone irregularities, bladder control problems, and sensory problems can also occur. This disease was first described in 1863 by Nikolaus Friedreich.
Visit to an MDA Clinic
Across the USA and Puerto, the MDA provides treatment at 200 clinics specializing in neuromuscular disease. These clinics serve individuals with over 40 types of neuromuscular disease. Through registering with their clinics, you too can receive world class medical care by a team of specialists.
Congenital Muscle Disease Registries
Recently, several new registries for individuals with various forms of congenital muscle disease have been started. These registries create databases in order to improve awareness, research effectiveness, and communication. Participation is voluntary and confidentiality will be protected.
Legislative Advocacy and Neuromuscular Disease
Lately, I have become increasingly involved in legislative advocacy. These efforts regularly involve writing to my elected officials to raise awareness regarding issues such as research funding and legislation regarding quality of life issues for those with neuromuscular disease.
Social Networking and Neuromuscular Disease
Social networking has made connecting with others easier than ever. Interacting through social networks may be especially beneficial for those who have significant disability limiting their opportunities to interact with others in person, including many people with neuromuscular disease.
Genetic Testing - To Test or Not to Test?
Many neuromuscular disease diagnoses can now be confirmed by genetic testing. But many facing the decision to test or not to test may have questions about whether or not to pursue genetic testing. These questions may become even more complicated when children are involved.
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