Heather Spadaccini shares how her life is affected having a friend with Myositis for Myositis Awareness Month and MSU’s #MyositisLIFE project. 

I have heard so many stories of how those diagnosed with a chronic illness, like Myositis, have lost their friends. I simply cannot understand how someone could abandon their friend when they are needed the most.

Jerry and I had been friends for many years, knowing him through his husband Charlie, but we were never really close, although we did do things together. When he was in ICU, practically on his deathbed to to complications from Polymyositis, it affected me in so many ways and I decided I needed to learn more about this rare disease that I have a hard time pronouncing. It was at this point, and still today, that we became the best of friends.

Thankfully, he pulled through but needed help that I was able to provide such as rides to doctor appointments and testing (sometimes a 2 hour drive each way), help with medications, and getting him out of the house to have some fun when he was up to it. Since his husband works everyday, and I have off on Fridays, I was so happy to be able to help.

Now, after a couple of years, we are inseparable. We have a standing date every Friday, my day off, and I try to bring some fun into his life. And of course I understand when he cancels plans because I know it means he is too tired, in too much pain, or too weak and needs to rest. I have heard the stories of others not understanding this and it saddens me. I now know that Polymyositis is a complicated disease and that each day is different. One day Jerry may be able to walk, with his cane, around town for a little, and other days, he cannot walk at all.

Jerry and the other members work so hard for MSU. So, I want Jerry to get away for awhile and I don’t care what we do, as long as we are together. We laugh, we cry, and we share anything and everything with each other. This is an example of how Myositis can be happy and beautiful. It brought me my best friend.



Myositis Support and Understanding Association (MSU) is a patient-centered, all-volunteer 501(c)(3) nonprofit organization Empowering the Myositis Community. Founded by Myositis patients, for Myositis patients, MSU provides education, support, advocacy, access to research and clinical trial matching, and need-based financial assistance.

View more information: Myositis Support


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