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Since starting this whole new life with necrotizing autoimmune myopathy (NAM) over 3 years ago, I tried to find ways to keep myself busy while also working to avoid getting hit with depression.

After about a year and a half of trying and trying, I found Myositis Support and Understanding (MSU) on Facebook. It was such a life changer for me. I knew that there were people out there dealing with the same things that I was but I didn’t really know how many.

I eventually found my way to the video support sessions. It was amazing to put faces to the names of those I have been talking to online. Then one day when I was talking with Jerry Williams, the founder and president of MSU who has been living with myositis for 17 years, I decided to ask if there was anything I could do to help out. I am so glad I did!

Jerry asked if I would be willing to volunteer to help moderate, and eventually lead, some of the video support sessions. Holy Crap! I couldn’t believe that I finally found an outlet, maybe even a purpose, I didn’t know I had been looking for! After learning the ropes, I realized that I was learning more about each of the types of myositis and also learning about the people who were dealing with these rare diseases on a daily basis.

After assisting with the first couple of video support sessions, I realized how much it helped with my attitude and my depression. I couldn’t believe how much helping others helped me!

In addition to meeting some amazing people, I have found a fulfilling purpose for myself through volunteering with MSU.

I find that volunteering for MSU has given me something to look forward to all the time! I always enjoyed the video sessions and even more so now that I am a volunteer. Instead of my mind being occupied with sadness, I am looking forward to our next video support session. I think about what we might talk about almost on a daily basis, I have a direction to think about helping people, instead of constantly worrying. Even while I was in the hospital and then nursing facility, I always looked forward to it, even though the WIFI was horrible while there.

Feeling more confident as I continue leading (and co-leading) the other video sessions, a couple of us with NAM decided we wanted to create a session just for NAM patients. We pitched the idea to start a once-a-month NAM video support session, and it is now a reality! I am thankful MSU listens to patients and works to implement their ideas.

In addition to meeting some amazing people, I have found a fulfilling purpose for myself through volunteering with MSU. I suggest doing whatever volunteer work you can do either with MSU (which is run by volunteers) or somewhere around your area. Volunteering is such a great thing for your mind and soul. Seeing the faces and hearing the voices of the people that you help is such an AMAZING EXPERIENCE.

NAM and IMNM refer to the same disease. Immune-mediated necrotizing myopathy (IMNM) and necrotizing autoimmune myopathy (NAM) are becoming more recognized thanks to research and the autoantibodies anti-HMGCR and anti-SRP.

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Jason Hopfauf

I have necrotizing autoimmune myopathy (NAM). I am a volunteer with Myositis Support and Understanding (MSU) and invite you to join us for our various monthly live video support sessions.




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