Not the Life We Wanted: An Inclusion Body Myositis Documentary

COLUMBIA, MARYLAND, UNITED STATES, May 31, 2024 /EINPresswire.com/ -- The Myositis Association (TMA) announces the premiere of “Not the Life We Wanted: An Inclusion Body Myositis Documentary.” Released this May for Myositis Awareness Month, this compelling new documentary features veterans and families affected by inclusion body myositis (IBM).

The 40-minute video explores IBM with segments from TMA members Jim Cressman, Augie DeAugustinis, Larry Leisher, Dan and Alicia Lowther, and Jim “Sudz” Szudzik. These brave veterans share openly about the effects of living with IBM. With the film bringing viewers into the patients’ homes, real-life accommodations like lifts and bathroom modifications are illustrated. The new documentary also includes an interview with former TMA Medical Advisor Thomas E. Lloyd, M.D., Ph.D., chair of the Department of Neurology at Baylor College of Medicine, Houston, Texas.

The video is a Hill and Ponton production in association with The Myositis Association.

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The TMA blog “IBM Patients Battle for Veterans Benefits” summarizes the challenges veterans face in obtaining disability benefits from the Veterans Administration. These benefits are crucial as they entitle former service members to comprehensive healthcare, disability compensation, travel allowances for medical appointments, medical equipment, a disability housing grant to adapt their home, stipends for their spouse as a caregiver, and other assistance.

Volunteers and leaders from the TMA Military Veterans with Myositis Affinity Group created a petition that urges the Veterans Benefits Administration at the US Department of Veterans Affairs to determine a presumptive service connection for veterans with IBM. This would mean that if a former service member is diagnosed with IBM, they would automatically receive disability benefits, as it would be presumed that their IBM is directly related to their military service exposure.

About The Myositis Association (TMA)

TMA is the leading patient organization for those who live with myositis, a group of rare autoimmune disorders that cause muscle weakness, pain, extreme fatigue, debilitating rashes, and, often, disability. The nonprofit organization has been working with and for the worldwide myositis community for more than 30 years. They produce and distribute educational materials for patients and clinicians, facilitate support and affinity groups, host educational programming, provide resources for living with myositis, and advocate for better treatment and funding for rare diseases.

TMA’s Military Veterans with Myositis Affinity Group supports patients and care partners who have prior military service. The virtual group provides a comfort zone for veterans to discuss issues specific to their community and increases camaraderie by offering veterans opportunities to network with each other. The group supports veterans with all forms of myositis, including those with IBM.
Media Contact: Linda Kobert, Communications Specialist; Email: linda@myositis.org; Phone: 434-882-2189.

Linda Kobert
The Myositis Association
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