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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.
Contacting the White House
Did you know that if you can contact the White House directly? If you are a U.S. citizen, making your voice heard to influence governmental decisions is your right and responsibility. Contacting the President of the United States at the White House is one of the ways that you can do this.
Contractures and Neuromuscular Disease
Contractures occur in the joints of many individuals with neuromuscular disease. These include muscular dystrophy, myopothy, Charcot Marie Tooth, ALS, and Friedrich’s ataxia. Contractures cause deformity in the affected joint, often leading to pain and functional difficulties.
Coping with Chronic Neuropathy DVD Review
In the DVD Coping with Chronic Neuropathy, Eugene Richardson brings uncommon understanding of neuropathy from his perspective as a long-term neuropathy patient, professional counselor, and patient advocate. He also displays humor and hope while covering this difficult topic.
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.
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.
Dankso Kip Shoe Review
Finding shoes that fit properly with orthotics and Ankle Foot Orthoses (AFOs) can be challenging. Most of the time, I wore athletic shoes. So, I was excited when the salesperson at a local shoe store brought out the Dansko Kip to try. The Dansko Kip has the style of a casual lace-up loafer.
Darius Goes West Movie Review
Even though he has a debilitating and fatal disease, Duchenne Muscular Dystrophy (DMD), Darius Weems shows us how to live in the documentary Darius Goes West. With the help of eleven friends, 15-year-old Darius embarks on a cross-country quest. This true story inspires, educates and entertains.
Resilience has been defined by psychologists as the ability to adapt well to the difficulties in our lives including all kinds of adversity and stress. Resilience can help those of us who are coping with significant health challenges such as dealing with neuromuscular disease.
Disability and Homelessness
According to a recent report, in 2010, for disabled individuals relying on U.S. Social Security Suplemental Income as their main or only source of income, Supplemental Income does not cover the cost of a modest one bedroom apartment. An estimated 20% of homeless adults in the U.S. are disabled.
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