February is the shortest month of the year. It also boasts the rarest date on the calendar: February 29, which only comes around once every four years. It’s why the date and the month have been chosen as a time to bring awareness to rare diseases. When it’s not a leap year, as this year, Rare Disease Day is celebrated on February 28.
Together with other rare disease organizations, The Myositis Association (TMA) is encouraging those who live with myositis diseases to Celebrate Your Rare by speaking out about the challenges they face and the need for more research into the causes, treatments, and possible cures for these diseases.
Myositis is a rare muscle disease that affects between 50,000 and 75,000 individuals in the US. By definition, any disease affecting fewer than 200,000 people is considered rare. But myositis is one of more than 7,000 rare diseases that collectively affect more than 30 million people in this country. That’s more Americans living with a rare disease than all those who have either HIV, heart disease, or stroke.
TMA members and partners will be joining together to raise awareness of myositis and other rare diseases by speaking out through social media and in the press. During Rare Disease Week February 24-28, TMA members will also join more than 500 fellow advocates from around the country on Capitol Hill to bring awareness to the challenges of living with a rare disease and to lobby lawmakers for improved healthcare legislation and increased funding for research for rare diseases. TMA will also participate in Rare Disease Day events at the National Institutes of Health on February 28.
Myositis is a collection of rare autoimmune muscle diseases that cause muscle damage and chronic disability. With severe weakness, extreme fatigue, debilitating rashes, and other often life-threatening symptoms, patients find it difficult to perform even simple day-to-day activities, including walking, climbing stairs, and raising their arms to comb their hair.
Myositis has several forms, including dermatomyositis, polymyositis, inclusion body myositis, necrotizing myopathy, and juvenile forms of the disease. Patients may also face other life-threatening disorders, including interstitial lung disease, antisynthetase syndrome, difficulty swallowing, and a higher risk of cancer and other diseases.
Like other rare diseases, myositis diseases are challenging to diagnose, requiring on average more than three-and-a-half years and five doctors to correctly diagnose. This delay can mean the difference—quite literally—between life and death. And like other rare diseases, myositis has few effective treatments, and there is no cure.
About The Myositis Association
TMA is the leading international organization committed to those who live with myositis, their care partners, and family members. A member-supported non-profit organization, TMA provides patient education and advocacy, facilitates patient support groups, hosts an annual patient conference, engages the medical community in educating physicians about these rare diseases, and funds research into the causes, treatments, and eventual cures for myositis diseases.
Journalists are invited to seek additional information about myositis at www.myositis.org. For photos, or to set up an interview with a local patient, myositis medical experts, or TMA’s Executive Director, call TMA’s Communications Director Linda Kobert at 434-882-2189 or email email@example.com.