Photo (left to right): Tony Martinez, Anthony Manetta, Gerry Compitello, Rich Schaffer, Beverly Boyarsky, Corinne DiSomma, Terry McSweeney.
Dr. Beverly Boyarsky, a resident of North Babylon and was diagnosed with a chronic disease known as Myositis in 2005. The disease affects relatively few Americans (50,000-75,000), but for those who have the disease it can be very debilitating.
She explains “While I am one of the unlucky few to have this disease, there are probably others in our community who have the disease and do not realize it. Myositis is an autoimmune disease often mistaken for other diseases such as lupus, multiple sclerosis and even Lou Gehrig’s disease.”
May has been declared Myositis Awareness Month by The Myositis Association (TMA). TMA is an international patient-based charity that funds research into treatments for myositis and educates patients and the health community about this rare chronic disease. The purpose of Myositis Awareness Month is to educate the public and create awareness about this little-known condition. Nationwide, myositis patients and their families observe the month of May as a time to educate the community about their rare disease. This month-long observance recognizes the need for more research and understanding of myositis — a group of rare, incurable muscle diseases — in the hope of faster diagnoses, better treatments, and ultimately a cure. This month is an opportunity for advocates at national and local levels to inform the public about these rare diseases.
Additionally, both Suffolk County and the Town of Babylon have declared the month of May Myositis Awareness Month, and the Town presented the proclamation of same to Dr. Boyarsky on April 25th, 2018. She was presented with the official proclamation by Town of Babylon Supervisor Rich Schaffer, Deputy Supervisor Tony Martinez, Councilmen Anthony Manetta and Terry McSweeney. Receiver of Taxes Corinne DiSomma and Town Clerk Gerry Compitello were also on-hand for the presentation.
On average it takes more than three years and five doctor visits to receive a correct autoimmune disease diagnosis. Myositis patients—including frantic parents of drastically weakened children—find a great deal of damage is done during this wait. Raising awareness of myositis, its symptoms, and treatments will help these patients and families.
While there is no cure yet for myositis, treatments are available. They include medications, exercise, and lifestyle adaptation. Starting a treatment plan early is essential to ensure the best possible outcomes and highest quality of life.
Myositis is one of 80 autoimmune diseases affecting nearly 50 million Americans. It is one of the rarest of the autoimmune diseases, and its different forms — dermatomyositis, polymyositis, necrotizing myopathy, and inclusion-body myositis — may affect 50,000 – 75,000 adults and children in the United States, although precise numbers are not known. Each of the four forms causes weakening of skeletal muscle, often beginning with the shoulders and thighs. The average time from onset of symptoms to diagnosis is between 3 – 4 years. These critical years are when significant damage can take place.
The Myositis Association provides information and support to the myositis community and physicians who treat patients with the disease. TMA also funds research in search of better treatments and a cure. TMA’s member and patient support network spans the globe.
The mission of TMA is to increase support, awareness, and funding for the myositis patient, caregiver, and research community. If you feel you or a loved one are experiencing symptoms of myositis, consult with your physician for diagnosis, and visit www.myositis.org for more information to help manage the disease.