Myositis Awareness Month, May 2018
Myositis In Focus
Myositis In Focus
Myositis Awareness Month, this year led by a patient committee, will focus on the realities of Myositis, both as patients and caregivers. We hope to bring both the difficult journey to diagnosis and difficulty in living with such a rare, often invisible and serious disease, into focus.
Myositis, in our case referring to the Idiopathic Inflammatory Myopathies, is a term meaning inflammation of the muscles. There are several types of this rare, systemic autoimmune disease including dermatomyositis, polymyositis, inclusion body myositis, and necrotizing autoimmune myopathy.
Myositis can cause muscle inflammation and weakness, muscle pain, fatigue, uncomfortable-to-painful and painfully itchy skin rashes, muscle wasting, difficulty swallowing or breathing, and complete disability. The average time for an accurate diagnosis is roughly 3.5 years, partly due to the rarity of myositis.
Myositis is also frequently misdiagnosed, and patients even dismissed by doctors telling them things like: “You just need to lose weight and exercise more,” “It’s just normal aging,” or “This is all in your head.” Some are even being told they are hypochondriacs and need to take a vacation.
In order to bring attention to the realities of Myositis during Myositis Awareness Month, we will help lead conversations surrounding the realities of how individual patients –even with the same disease– can present differently, respond differently to the same therapies, and look differently, in hopes that others will look closer in an attempt to better focus on understanding and seeking knowledge about myositis and its various forms.
Part of our commitment to myositis patients, myositis caregivers, and the public is to provide education about topics surrounding the various forms of myositis.
We host monthly online video education, support, and activity sessions. See a listing of upcoming education sessions below. All events are free.
See upcoming live, online patient support sessions. These do not require registration.
- September 28 @ 4:00 pm - 6:00 pm EDT
- October 11 @ 7:00 pm - 8:30 pm EDT
- October 20 @ 7:00 pm - 8:30 pm EDT
- October 26 @ 4:00 pm - 6:00 pm EDT
- November 30 @ 4:00 pm - 6:00 pm EST
Why do you "Focus on Myositis?"
Take a photo with the Myositis Awareness Sign and Share
Download, print, fill in the blank – write large with a thick, dark-color marker – and take a photo with it! Get creative and invite others to join in. Post your sign photo with hashtags #MyositisInFocus and #MyoSelfieSign!
Share with us to be entered to win a Myositis Awareness T-shirt. Random winners to be announced May 28, 2018.
To download and save the sign, right-click the image below and choose “Save As” or “Save image as” or click the buttons to download.
Facebook and Twitter Profile image
To download, simply click on the image, then right-click and choose “save as” or “save image as.” Each browser will word it differently. Then, visit your Twitter and Facebook profiles and add it as your profile image.
Graphics for download
Disease-specific, general myositis, and caregiver awareness graphics are available.
If you are on Facebook, visit our photos section to share.
Or, download the Myositis Awareness Toolkit where you will find all graphics and other materials to use during Myositis Awareness Month, and all year long.
Focusing on the realities of myositis would be incomplete without you sharing your photos, short videos, and personal stories for us to share publicly on our website and social media.
Let’s show the world a variety of what myositis looks like. Some may look healthy, some may be covered with itchy-to-painful skin rashes, some walk with a cane, walker or use a wheelchair or powerchair, some wear oxygen and others have feeding tubes and other medical devices. Many have a combination of these. Myositis looks different for each person.
We are proud to announce a partnership with Antidote Technologies, a digital health company that connects patients with research, to provide clinical research access and tools to their community.
By providing a clinical trial search engine powered by Antidote on our website, we will help patients find their clinical trial match and accelerate much-needed research in myositis, a chronic inflammatory muscle condition with no known long-term treatments.
Clinical trials need myositis patients. Start your clinical trial match.
Create your very own MSU Fundraiser. Use Facebook, Crowdrise crowdfunding site, or host an in-person event! Let us know what you are doing!
Make a donation to MSU and help support our mission and vision, and our programs and services. Empowering the Myositis Community with your help.
Promoting Awareness of Myositis can be as simple as talking to your family members and friends about your experiences, ways they can help support patient-centered myositis nonprofits like MSU, and ways they can learn more and get involved.
There are other ways you can help make an even larger impact. Utilizing some of the ideas below can help spread the word to a larger audience. We are happy to help you in any way we can. Contact us and let us know what you need to make your awareness promotion and fundraising event a success.
Register now for your Free MSU Membership
Join us as a member and you will receive email updates when new awareness materials are available and you will have your very own MSU Myositis Network account and profile, and much more. We are working to improve our onsite community, along with many other tech updates and offerings.
Creating your own MSU Myositis Fundraiser on Facebook is so easy! Visit the MSU public Facebook page fundraiser section, and under the header graphic/video, click the blue “Raise Money” button to get started.
Then, customize the image and wording to make it personal to you. Once ready, complete and start sharing. Share your fundraiser, with updates. often.
Fundraising with Crowdrise
Crowdfunding campaigns can be a ton of fun! Ask your family members and friends to join the team and then start sharing the campaign.
To get started, click the button below to visit the MSU Crowdrise campaign. Then, click the orange “Join the Team” button!
Posting frequent updates with photos for better success!
Make an online donation
As a nonprofit, we rely on donations for the work we do.
We hope you will make a contribution. We appreciate your support!
Donate by check
If you would like to make your donation by mailing a check, please make your check payable to MSU and mail to:
9125 N. Old State Road,
Lincoln, DE 19960
If you would like to make the donation in honor of or in memory of your loved one, please include a note with the information.
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