I think we often neglect to hear what our children and younger family members think about us living with such a rare and complicated disease. It must be confusing for them at times when one day we are able to walk and the next we cannot.
Sage Filmore’s mom has Dermatomyositis and Sage explains a little about why donating to MSU is important and how her life is affected by her mom, Emily Filmore, having this and other diseases that often accompany myositis. We must remember that our disease affects those around us, including our children, family members, and our friends. So help MSU raise the funds we need to continue to help patients and make their lives a bit easier.
Hello, I’m Sage, and my mother has Dermatomyositis so she suffers from horrendous rashes, migraines, tummy aches, weakness all over her body (specifically in her arms, legs and back) and other diseases that are caused by DM. Myositis is rare, correct? Maybe rarer than you think, less than .02% of US citizens have myositis so doctors have very little knowledge about myositis since little knowledge means little help they have to go to specialists which are most likely at Mayo Clinic, Johns Hopkins and Cleveland Clinic. If you don’t live near these places you’re in bad luck. If you need to go to these places immediately and you are having financial problems but if you are a member of someplace like MSU you can apply for help and support. MSU members can find support in the diagnosis process where people can tell stories to make people feel more confident to tell theirs and MSU also gives financial support!
My mommy has made many friends in the support groups that know what she is going through. Mommy being sick is hard for me, and I wonder what it is like for other kids. One time, my mom was going to take me on a field trip (I’m homeschooled) but she forgot the time we were supposed to be there because her medication was making her have memory problems. But she made it up to me by taking me to a painting place. Even though sometimes I wish she was normal, if so, my life would be totally different.
You can help people like my mom, caretakers, and children like me have the best life they can by donating to MSU.
You can make your year-end donation at UnderstandingMyositis.org/donate or by mailing a check payable to MSU to 9125 N. Old State Rd., Lincoln, DE 19960.
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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