When I was first diagnosed with Polymyositis I went in search of support groups.  I looked online, on social media sites and basically anywhere I thought I may find the support I was looking for.  Now, I cannot guarantee that I did not overlook a group, but I did not find anything at that time.  I decided to start a Facebook group and a blog to not only try and help myself but to also invite others in to share our experiences, learn from one another and provide each other with the support and understanding that only someone with Myositis can provide.

In my excitement, I titled everything “Polymyowhat: Understanding Myositis.” At the time I thought it was clever and that it would work.  What I did not realize at that time, that I now do is I have been unknowingly deterring those with Dermatomyositis, Inclusion Body Myositis (IBM) and other forms of Myositis from joining as they thought, rightly so by the name, that it was only for those with Polymyositis.

When this was brought to my attention I went in to change the name of the group on Facebook however I was too late.  Facebook’s group policy does not allow for name changes after you acquire a certain number of members (believe it was 150 or 200) and we had bypassed that number already.

Therefore, I want to apologize to those who may have missed something shared in our Facebook group that could have potentially been helpful to you.  Since my diagnosis, there are now a number of Facebook groups, some of which may have been around prior. We share a lot of the same members but you do get something different out of each group.  I am a member of a few others.

I simply wanted to be sure that everyone knows, no matter what form of Myositis you have, you are welcome to join our group, write for our blog and participate in any online events that we may have.  I know I speak for the group when I say we hope to see you soon on Facebook!

(Note: “Polymyowhat:Understanding Myositis” has become “Myositis Support and Understanding.”

 

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Jerry Williams, the Founder and President of MSU, was diagnosed with Polymyositis in 2003 at the age of 27. Since his diagnosis, Jerry has made it his mission to help others living with the rare disease, Myositis. To this effort, Jerry is involved in many different aspects such as education, writing, helping support and answer questions from patients and caregivers, social networking and website development, and much more.

View more information: Jerry Williams

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Hi, this may be interesting to you: For all with Myositis, not just Polymyositis! The link is included below: https://understandingmyositis.org/for-all-myositis-patients/ --- Myositis Support and Understanding is a 501(c)3 nonprofit organization.