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Veterans Battle VA to Recognize Inclusion Body Myositis as Service-Related

Update The Unseen Battle of Veterans with Inclusion Body Myositis Inclusion Body Myositis (IBM) is a rare and progressive muscle-wasting disease affecting thousands of veterans across the United States. For these men and women, the struggle is not just with IBM itself, but also with the Department of Veterans Affairs (VA) which largely refuses to recognize this debilitating condition as service-related. Veterans like Greg Rathburn and Larry Leisher have been vocal about the challenges they face in securing health benefits, advocating to have their experiences acknowledged and validated by the government they served. Understanding Inclusion Body Myositis IBM is noted as the most common acquired muscle disease amongst individuals over 45. However, its slow progression often leads to late diagnoses—veterans often find themselves grappling with symptoms that initially seem benign or indicative of aging. According to Dr. Thomas Lloyd, a neuroscientist who has specialized in muscle diseases, like many veterans experiencing similar issues, Rathburn has faced unyielding obstacles in navigating the VA benefits system. Despite increasing evidence that suggests a higher prevalence of IBM among veterans, there remains an unsettling lack of acknowledgment by the VA. For instance, a recent study indicated that veterans might be diagnosed with IBM at rates between six to nineteen times higher than those in the civilian population—a statistic that underscores the necessity for closer investigation into military exposure risks. Pushing for Recognition and Benefits The shared struggle of veterans with IBM highlights a system that many believe is designed to deny rather than support. “For us, it's not about the money. It's about validation,” says Rathburn, who has battled for a connection between his medical condition and military service for over a decade. After multiple denied claims, Rathburn finally succeeded in securing a 100% service connection for his disease in May 2026, marking a significant victory not only for him but also for advocacy efforts on behalf of his fellow veterans. Advocates are calling on the VA to classify IBM as a presumptive condition—similar to how they recognize Amyotrophic Lateral Sclerosis (ALS)—thus automatically associating the disease with military service. Such a change would reduce the need for veterans to provide extensive evidence linking their conditions to service, alleviating financial burdens caused by prolonged appeals processes. The Emotional Toll on Veterans and Their Families The emotional and financial toll of battling both IBM and the VA system cannot be understated. As seen in the stories of veterans like Dennis McKinney and Jim Cressman, caregiving responsibilities often fall heavily on family members, impacting both their emotional health and finances. Families are forced into financial distress, having to pay out of pocket for necessary medical equipment and adaptations to their homes. McKinney, who relies on extensive caregiving assistance, shared that the experience has been deeply humbling and a source of constant anguish. This emotional burden, exacerbated by a lack of institutional recognition, highlights the pressing need for legislative reforms aimed at recognizing IBM and supporting the veterans who suffer from it. A Call to Action: Importance of Advocacy With two decades of persistent effort, veterans like Larry Leisher are determined to advocate for change. He hopes that by raising awareness about this little-known muscle disease, he can prevent younger service members from facing similar struggles. “Our goal is simple: We want the VA to recognize IBM as service-connected and see exactly what this disease has done to veterans,” he declares passionately, underlining the plight faced by many. Leisher’s advocacy has sparked attention among lawmakers, leading to discussions at the highest levels of government aimed at pushing for necessary reforms. As officials begin to recognize the inequities faced by veterans living with IBM, it’s crucial that their voices continue to echo, ensuring that their service is acknowledged and that they receive the care they deserve. The journey ahead is long, but momentum is building towards change. The fight for recognition and support from the VA is crucial, and veterans like Rathburn, Leisher, and McKinney represent a collective call for justice that underscores the importance of not just acknowledgment, but action to bring about meaningful reform. Take Action: Stand with Our Veterans As veterans bring their stories to the forefront, it’s essential for the community to support their fight for recognition. Engage with local advocacy groups, reach out to representatives, or simply share their stories to amplify their voices. Together, we can push for the changes needed to ensure our veterans receive the acknowledgment and support they so rightfully deserve.