Myositis Awareness Month is a time to tell the story of your myositis journey. Thanks to TMA members Dan and Alicia Lowther for sharing their journey in this way with us. The couple was featured in the film “Not The Life We Wanted: An Inclusion Body Myositis Documentary.” It’s a compelling new documentary that features veterans and families affected by inclusion body myositis (IBM).

  • What is a fun fact about you, that has nothing to do with myositis?

We got tired of our corporate America jobs and long Chicago winters and moved to Costa Rica with our son, Ric, who was nine at the time. Dan drove a Toyota and Alicia drove a Mitsubishi from Chicago to Costa Rica where we lived in a small fishing village from 1997-2001. That small fishing village now has a Hard Rock Casino and fast-food restaurants, so we are thankful to have lived there when we did.

  • What is your most useful hint, hack, or tip for navigating daily life with myositis? Do you have a specific self-care practice or resource that you recommend to others?

We attended a “hints and hacks” session at the TMA Annual Patient Conference in Orlando in 2022 where someone showed a handheld bidet. That was a game changer! That alone was worth the price of admission.

  • What was your first myositis symptom?

Dan has IBM, so his first symptoms were muscle weakness, falls out of the blue, and difficulty climbing stairs.

  • How long did it take you to receive an accurate diagnosis.

The diagnosis took about three years. We would tell Dan’s primary care physician of some of the things we were noticing, but there was no follow-up. When reeling in fish became a challenge, we said, “There is a problem, and something has to be done.” That is when we were referred to a rheumatologist, who suspected myositis, and a muscle biopsy was ordered.

  • How has myositis affected your life?

Inclusion Body Myositis (IBM) has affected EVERY aspect of our lives. We downsized and moved into a condo so that less maintenance is involved. Everything takes a lot more planning and time. We have learned to be patient and flexible.

  • How has your family/community supported you on your myositis journey?

We are on a mission to have IBM become presumptive service connected through the Veterans Administration so vets with IBM can access the services they need. Family members have helped tremendously by meeting with their senators and representatives, personally delivering letters, and also mailing letters. Through the process they have become advocates and are educating others about this rare muscle wasting disease. They have also signed and shared the petition established to garner support for the cause. Sign petition: Help Catastrophically Disabled Veterans Get the VA Benefits They Deserve ·

  • How does your care team of doctors, specialists, infusion providers, etc. help you manage your disease?

While there is currently no cure for IBM, our medical team monitors progress and ensures we receive any durable medical equipment that is needed. We love our physical therapist. Staying active is the only treatment we have.  

  • What is one thing you wish every medical student knew about myositis, before they entered practice as a physician?

That IBM exists! We want doctors to know about myositis and recognize the symptoms so that the chance of receiving an accurate diagnosis is increased. 

  • How has TMA been helpful to you and your family?

We love the sense of community and access to Zoom meetings for the TMA Military Veterans with Myositis Affinity Group and our local Keep-In-Touch support group (KIT). These give us the chance to get to know others who truly understand our illness and the challenges we face.

  • What words of encouragement do you want to share with others who have forms of myositis?

Embrace the “spoon theory” and listen to your body. Some days you just can’t do what was planned, and that’s OK. And always rely on Faith, Hope, and Love!

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