General Tips

Explaining IBM to Others

IBM is rare and invisible, making it difficult for others to understand. Here are ways to communicate effectively:

• Simple explanation: "IBM is a progressive muscle disease that makes my muscles weak and tired. It's not contagious, and it's not something I did to myself."
• Be specific about limitations: Instead of saying "I'm tired," say "I need to rest because my muscles fatigue quickly with activity."
• Provide written information: Share TMA resources or printed fact sheets with family, friends, and coworkers
• Educate your medical providers: Many doctors unfamiliar with IBM may not understand its progression; bring information to appointments
• Use the IBM Functional Rating Scale: A standardized tool that helps quantify functional limitations (available at myositis.org)

Insurance Navigation

Navigating insurance with a rare disease requires persistence and documentation.

• Document everything: Keep detailed records of symptoms, limitations, doctor visits, and treatments
• Get prior authorization: For specialized equipment, treatments, or therapies
• Appeal denials: Many insurance denials can be overturned with proper documentation and physician letters
• Use patient assistance programs: TMA maintains a list of pharmaceutical assistance programs
• Medicare/Medicaid: Medicare covers power wheelchairs and home modifications with proper documentation
• Long-term care insurance: File claims early — before you need extensive care
• Disability insurance: Apply for SSDI or SSI if you can no longer work

Finding Specialists

• TMA Find a Doctor: myositis.org/patient-support/find-doctor
• Academic medical centers: Major university hospitals with neuromuscular disease programs often have the most experience
• Myositis specialist teams: Some centers have multidisciplinary teams
• Second opinions: Worth traveling to see an IBM specialist
• Telemedicine: Many specialists now offer virtual consultations

Support Groups and Communities

• TMA Support Groups: In-person and virtual groups organized by region and interest
• TMA Affinity Groups: Men Managing Myositis, Young Adults, Caregivers
• TMA Community Forum: Password-protected online discussion board
• MyoCon: TMA's annual global myositis patient conference
• MSU IBM Support Group: One of the oldest Facebook groups for IBM patients and caregivers
• MSU Monthly Zoom Support: Monthly virtual support sessions for myositis patients
• Myositis Warriors: Facebook community for myositis patients
• Facebook groups: Search "Inclusion Body Myositis" on Facebook
• International groups: TMA lists groups in Canada, Australia, New Zealand, Europe, and Asia

Clinical Trials

Clinical trials are essential for advancing IBM treatment. Current research areas include:

• Rapamycin/sirolimus (mTOR inhibitor)
• BCG vaccine immunotherapy
• Anti-amyloid therapies
• Stem cell therapies
• Gene therapy approaches

How to participate:

• Search ClinicalTrials.gov for "Inclusion Body Myositis"
• Talk to your neurologist about trials you may be eligible for
• TMA's website lists current IBM clinical trials
• Consider donating your brain post-mortem through brain bank programs

Disability Benefits

Social Security Disability Insurance (SSDI)

• IBM is listed under Section 11.15 (Disorders of the Peripheral Nervous System) in the SSA Blue Book
• Requires documentation that you cannot perform substantial work
• The IBM Functional Rating Scale can support your application
• Apply as soon as you can no longer work — the process takes 3-6 months typically
• Consider a disability attorney or advocate

Supplemental Security Income (SSI)

• For those with limited income and resources
• Asset limits apply

Vocational Rehabilitation

• State programs can help with job modifications, retraining, or career transition

Veterans Benefits

• IBM may be service-connected for veterans
• TMA provides resources for veterans at myositis.org