Advanced Stage IBM

Comprehensive support for wheelchair-bound patients and their caregivers

ImportantThis section is dedicated to people in the advanced stage of IBM who are completely immobile or wheelchair-bound. The challenges here are unique — from equipment needs to travel difficulties to finding hospitals with adequate resources. You are not alone.

What Defines the Advanced Stage

The advanced stage of IBM (typically 10+ years from symptom onset) is characterized by:

  • Wheelchair dependence: Most patients are unable to walk safely or at all
  • Severe limb weakness: Arms and legs significantly weakened; fine motor tasks nearly impossible
  • Respiratory involvement: Breathing may require assistance, especially during sleep
  • Severe dysphagia: Difficulty with both solids and liquids; possible feeding tube need
  • Full-time care needs: Most activities of daily living require assistance

The Unique Challenge: Rare Disease + Equipment Dependency

IBM creates a particularly difficult situation for advanced-stage patients. The disease requires specialized equipment and care, but because it is relatively rare (affecting approximately 20,000 people in the US), many hospitals and healthcare facilities lack the necessary resources.

Hospital equipment shortages are realMany community hospitals do not stock MRI-compatible wheelchairs, specialized beds with tilt functions, adequate ventilator support, or EMG machines with trained technicians. This means advanced IBM patients often need to travel to academic medical centers for routine care — creating additional barriers.

Key Challenges

50%
of IBM patients develop dysphagia
48hr
minimum airline notice for wheelchair
$5K-50K
power wheelchair cost range
#1
aspiration pneumonia is top cause of death

Navigation

Explore the dedicated sub-sections for detailed guidance:

  • Travel Tips: Airlines, accessible hotels, emergency preparedness
  • Equipment Guide: Wheelchairs, hospital beds, ventilators, feeding tubes
  • Caregiving: Transfers, daily care, caregiver burnout, respite options

Emergency Preparedness

TMA provides essential emergency resources that every IBM patient should have:

  • Myositis Emergency Card: Wallet-sized card documenting essential information
  • "Before You Dial 911: The 411 on Myositis in the ER": One-page ER guidelines
  • "My MyoHistory" form: For telling your story to providers when time is critical
Download these nowKeep these in your wallet, phone, and with your travel companion at all times. Available at myositis.org/myositis-library/myositis-resources/resources-for-an-emergency/