LINCOLN, DE, UNITED STATES, May 1, 2018 /EINPresswire.com/ — Myositis Support and Understanding Association, an all-volunteer, patient-centered 501(c)(3) nonprofit organization, commemorates National Myositis Awareness month with the 2018 theme, “Myositis In Focus.”
In observance of Myositis Awareness Month during the month of May, Myositis Support and Understanding Association (MSU) has announced its 2018 theme, “Myositis In Focus.” Focusing on the realities of Myositis (Inflammatory Myopathies) will promote better understanding of the variables that patients face, along with the difficulties of diagnosing and treating these rare autoimmune diseases affecting the muscle, skin, and lungs.
There is no “typical” Myositis patient. Some must use assistive devices for mobility like canes, walkers, wheelchairs, or power chairs. Some are covered with itchy-to-painful skin rashes, some have chronic muscle pain, some wear oxygen, some have feeding tubes and other medical devices. Some look perfectly healthy to the eye. The invisible illness part of Myositis makes it a difficult-to-understand disease, even for those in a patient’s life.
Myositis is estimated to affect 50-75K people in the U.S. and is one of the rarest of the 80 autoimmune diseases. On average, it takes 3.5 years to accurately diagnose. Factors creating this delay include a lack of typical diagnostic tools and findings as well as the rarity of the disease.
Great strides have been made that should remind us all that while we may feel that very little is being done for us, there truly are many things in the works that deserve our appreciation.
The need for further education at all levels, increased awareness, and better understanding is vital and is a part of what MSU is offering during Myositis Awareness Month. Through outreach, education, and fundraising, we can make myositis a better-known disease.
Using the live online video education session platform that is unique to MSU, several Myositis experts have agreed to host sessions on topics surrounding Polymyositis, Inclusion Body Myositis, and Dermatomyositis. Additional sessions led by patients, nurses, and caregivers will focus on informative support.
As a part of our commitment to patients, and in partnership with several caring sponsors committed to the Myositis community, MSU will be hosting “Myositis In Focus: A Day of Remembrance” on Sunday, May 20, 2018, beginning at 2 PM EDT. This will be a live streaming YouTube video event to honor and remember those we have lost. If you or someone you know has lost a loved one to Myositis, MSU is asking you to please consider sharing their name and some brief information to be included in this event. Names can be shared online at www.UnderstandingMyositis.org/in-memory.
MSU has made it easy for everyone interested to get involved in Awareness Month. To view all materials, events, and suggested ways to make an impact, visit the Awareness page of the MSU website at www.UnderstandingMyositis.org/awareness
MSU invites everyone to start promoting awareness today and throughout the Month of May.
Join our email updates and newsletter
Subscribe to our general myositis-related email updates. If you are a member of MSU, you will automatically recieve these updates and there is no need to subscribe here. To register for your free MSU membership and access to The Myositis Community Network, visit UnderstandingMyositis.org/register