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Patients and patient organizations play a pivotal role in myositis research. Those who live with the disease are, in fact, the experts on myositis, and increasingly they are actively involved in academic research, national and international myositis research organizations, industry-sponsored patient advisory councils, and government supported research initiatives. The value of this expert insight is…
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No one needs to tell someone with myositis that the disease brings with it a great many physical, mental, and financial challenges. The debilitating symptoms significantly affect one’s quality of life (QoL), yet the impact of these burdens has not been documented in the literature. Until now. Recently, a team of researchers, led by TMA…
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By Kim Murray RD, LDN Inflammation is your body’s natural way of protecting itself. If you scrape your knee, for example, the redness and swelling you see on the skin around the cut are signs that your immune system is working to heal the injury. But when low level inflammation doesn’t go away and becomes…
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If you have been diagnosed with a rare disease and you can’t work because of the symptoms of that disease you may qualify for Social Security disability benefits. As long as you expect that you won’t be able to work for at least 12 months you can file an application for Social Security disability benefits….
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By Tesse Muldoon Myositis has had a profound impact on my life in many ways. After seven years of odd skin rashes and a number of other autoimmune conditions, I was diagnosed with cancer-associated dermatomyositis in 2017, and it drastically changed my path. Before becoming disabled, I was a certified nursing assistant (CNA) and was…
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