Myositis In Focus
May is Myositis Awareness Month! Myositis (Inflammatory Myopathies) is a group of rare, systemic autoimmune muscle, skin and lung diseases affecting an estimated 50-75K people in the U.S. and is one of the rarest of 80 autoimmune diseases. There is an urgent need for increased recognition and funding for myositis, which includes dermatomyositis, polymyositis, inclusion body myositis, and necrotizing autoimmune myopathy, along with the juvenile forms of dermatomyositis and polymyositis.
Myositis often takes years, on average 3.5 years, to be properly diagnosed. Due to the rarity, complexity, and lack of education and awareness, myositis patients are often misdiagnosed with some patients being dismissed as hypochondriacs, told their symptoms are "normal aging", and even told they just need to take a vacation.
Part of the issue is the variable presentation of myositis; each patient is very different in how their symptoms present, how they respond to the off-label use of certain medications, and even in their diagnostic test results, having atypical findings, even with the same type of myositis.
The only approved treatment for most forms of myositis are steroids, which are not recommended for long-term use due to the damaging side effects. For inclusion body myositis, there are currently no available treatments.
As you see, there is an urgent need for education, awareness, and safe and effective therapies, as well as for myositis patients to get involved in clinical trials.
With your help, we can promote awareness, education, and fundraising and put Myositis In Focus.
We must never forget that myositis can also be deadly for some. We have lost many myositis champions over the years and we will honor and remember them always.
In partnership with several caring sponsors committed to the myositis community and myositis research, we will host "Myositis In Focus: A Day of Remembrance" on Sunday, May 20, 2018, beginning at 2 PM EDT. This will be a live YouTube streaming video event to honor and remember those we have lost. Please join us on our YouTube page at YouTube.com/UnderstandingMyositisOrganization
Will you help us make a difference in the lives of myositis patients and caregivers by getting involved in awareness month and making a donation to MSU? And, creating your very own MSU fundraiser using Crowdrise or Facebook will increase our impact.
A donation of any amount will help and be put to immediate use in providing essential patient and caregiver support programs, advocacy, clinical trial matching, financial assistance for patients in need, updates to existing, and the creation of new technologies that muscle disease patients can better utilize, and much more.
Visit the MSU Awareness page to see ways you can get involved today, and all year long.