Three-and-a-half and five. That is the number of years and doctors, respectively, that is takes on average for a patient to receive a correct diagnosis of an autoimmune disease. For patients and family members affected by one such disease – myositis – they can find that a great deal of damage associated with their disease can happen during this wait.
“Having a rare disease can be a lonely experience for patients and frustrating when they find out how little is known about their disease,” says Bob Goldberg, Executive Director of The Myositis Association (TMA). “It is for that reason that raising awareness of a rare disease is so important. It will lead to not only better and quicker diagnosis, but it also reassures those suffering from the disease that they are not alone and others care to help them find the proper treatment for their rare condition.”
That is part of the reason why May is designated as a month for raising awareness of myositis, its symptoms and treatments to help patients and families. According to TMA, myositis is characterized by muscle inflammation, and can be caused by infection, injury, certain medicines, exercise and chronic disease. Some of the chronic or persistent forms are idiopathic in nature which means the cause is unknown. Forms of myositis include dermatomyositis, polymyositis and inclusion body myositis. All forms cause progressive skeletal muscle weakness and fatigue. Myositis affects approximately 50,000 men, women and children of all races in the U.S.
This month, TMA is working along with its members, support groups, and corporate partners to raise awareness of the disease. Public efforts include letters to the editor of local newspapers, public events where educational materials about myositis are distributed, and creative approaches such as a TMA member throwing out the first pitch at college baseball games, a myositis patient running in a 10K wearing an exoskeleton, and a racehorse named Myositis Mystique running to raise awareness of the disease. Increased outreach to the physician community is through programs such as TMA’s Visiting Professors where TMA Medical Advisory Board members conduct grand rounds, publication and distribution of a revised edition of The Physician’s Guide to Myositis, and the recent Global Conference on Myositis.
Mallinckrodt’s Autoimmune and Rare Diseases Business has a history of serving people with myositis and their physicians. In addition to working with the healthcare community Mallinckrodt is also a corporate supporter of Myositis Awareness Month.
Learn more about myositis at www.myositis.org.