Newswise — In California, videographer Mike Peck wears gloves, even in his mild climate, to insulate his always-cold fingers. In Delaware, Anupa Smit struggles to keep up an arduous workout regimen to counter the intermittent spells of muscle weakness she knows to expect. In Florida, Ray Lesoine has used a lift to get in and out of his wheelchair ever since his own muscles became too weak to bear his weight.
Mike, Anupa, and Ray have myositis, a disease with many mysteries, few treatments, and no cure. Fortunately, they do have dedicated scientists searching for answers that will improve their lives and the lives of thousands of others like them.
Those scientists are likely to experience a boost in funding support in the coming years thanks to new legislation passed this week by the Senate, and expected to be signed by President Barack Obama. The 21st Century Cures Act includes $4.8 billion to fund, in part, the President’s “Precision Medicine Initiative.” This initiative aims to transform the way we treat disease, especially rare diseases like myositis.
The Myositis Association supports research into the causes, treatments, and ultimately a cure for this rare disease. Since 2002, when a Canadian librarian bequeathed $2 million to the organization, TMA has approved 50 research projects, including grants and fellowships, totaling nearly $6 million. While TMA has received a few large bequests over the years, much of the nonprofit’s research funds are a result of small donations from TMA members and their families.
Myositis, an autoimmune, inflammatory disease of the muscles, takes several forms. One form (dermatomyositis) includes an uncomfortable and unsightly rash that often remains long after medications have modified the muscle inflammation. Another form, polymyositis, is so far ranging in its symptoms and pathology that most experts think it will eventually be considered several diseases. Children with juvenile dermatomyositis sometime become unable to walk or even stand, a situation that terrifies them and their families.
Inclusion body myositis, like Alzheimers and Parkinson's diseases, is believed to be related to the aging process. Those with this form of myositis—the most common muscle disease in people older than 50—live a normal lifespan but generally become significantly disabled over time.
Patients face a number of other life-threatening disorders as well, including a deadly lung disease, a higher risk of cancer, arthritis, fevers, difficulty swallowing, and other diseases. The medicines used to treat myositis also can cause damaging side effects.
TMA's research funding focuses on improving treatment for myositis patients and finding a cure for all forms of myositis, also called idiopathic inflammatory myopathy. As the role the immune system is better understood in everything from cancer to diabetes, it is expected that TMA's research efforts will have implications for a host of other diseases.
Journalists are invited to seek additional information about myositis at myositis.org. For photos, or to set up an interview with a local patient, myositis medical experts, or TMA’s executive director, call 434-882-2189 or email [email protected]
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