What is inclusion body myositis?

Inclusion Body Myositis (IBM) is a rare, progressive muscle disease characterized by chronic muscle inflammation and weakness. It is the most common acquired muscle disease in adults over 50, affecting approximately 20,000 people in the United States.

Sporadic IBM (sIBM), the most common form, is NOT inherited — it occurs randomly. However, about 67% of patients carry a specific HLA gene combination that makes them genetically susceptible. Hereditary Inclusion Body Myopathies (hIBM) are a separate group of genetic muscle diseases.

Is there a cure for IBM?

As of 2026, there are no FDA-approved treatments specifically for IBM. The disease is notoriously resistant to corticosteroids and immunosuppressive drugs. Physical therapy and adaptive strategies are the mainstay of management. Active research is underway with promising clinical trials.

Does IBM qualify for disability benefits?

Yes. IBM is listed under Section 11.15 (Disorders of the Peripheral Nervous System) in the SSA Blue Book for Social Security Disability Insurance (SSDI). The IBM Functional Rating Scale can support your application.

What exercises are safe with IBM?

Walking, aquatic therapy, light resistance training, balance training, and hand/finger exercises are all recommended for IBM patients. Start slowly, build over 6-12 weeks, and consult with a physical therapist who understands myositis.

Why is IBM often misdiagnosed?

IBM is frequently misdiagnosed as polymyositis, normal aging, fibromyalgia, ALS, or sarcopenia. The average diagnostic delay is 5-10 years from symptom onset because IBM shares symptoms with more common conditions.

Traveling with IBM — Airline Tips, Hotels, and Equipment

Planning is essentialTraveling with advanced IBM requires extensive preparation. Start planning weeks or months in advance. The more equipment and care needs you have, the earlier you should begin.

Airline Travel

Before You Book

Contact the airline 48+ hours before travel to arrange wheelchair assistance and medical equipment transport
Request bulkhead or aisle seats for easier transfer
Know your rights under the Air Carrier Access Act
Consider travel insurance that covers medical equipment damage or loss

Wheelchair Transport

You can remain in your own wheelchair until the gate — it will be gate-checked
Get a claim tag and document condition with photos before and after
Some airlines allow folding power chairs as carry-on if they fit
Request aisle chairs for boarding
Consider shipping durable medical equipment (DME) ahead rather than relying on airline handling

Medical Equipment

Portable ventilators, suction machines, and CPAP/BiPAP are permitted as carry-on medical devices under FAA regulations
Lithium batteries in power wheelchairs have specific IATA regulations — check airline policy in advance
Carry documentation of all medical devices
TSA provides PreCheck lanes for mobility devices

Wheelchair damage is commonAirlines have a documented record of wheelchair damage. Always photograph your wheelchair before and after travel, and keep the claim tag. Consider shipping critical equipment ahead to your destination.

Accessible Hotels

Book ADA rooms early — roll-in shower rooms sell out quickly
Call ahead to confirm specific accessibility features
Request: Roll-in showers, grab bars, lowered beds, accessible bathrooms, wide doorways
Lower floors for easier evacuation
Verify wheelchair accessibility of restaurants, attractions, and transportation at your destination

Accessibility review sitesAccessibleGO and Wheel the World provide detailed hotel accessibility reviews from wheelchair users. Use these resources when planning your stay.

Train Travel

Most Amtrak trains are wheelchair accessible
Reserve accessible bedrooms or rooms in advance
Stations have accessible boarding with lifts or ramps
Plan extra time for transfers at stations

Cruise Ships

Many cruise lines accommodate wheelchair users (Carnival, Royal Caribbean, Celebrity, Princess have accessible cabins)
Book early — accessible cabins are limited
Request a cabin near elevators
Contact the cruise line's accessibility desk in advance
Research shore excursion accessibility in advance

Mobility Vans

A wheelchair-accessible van is essential for getting around. Companies like Mobility Works specialize in converting vans for wheelchair users.

Key Considerations

Door opening height: Measure carefully — taller patients need a higher door opening (60"+) to avoid hitting their head when entering. Standard conversions may not provide enough clearance.
Easy Lock system: Consider installing an Easy Lock docking device on the van floor. It automatically locks the wheelchair in place when you drive over it — hands-free, no straps needed. Much safer and easier than traditional tie-down straps.
Ramp vs. lift: Ramps are simpler and more reliable; lifts have more moving parts that can fail
Drive-from-wheelchair: Some conversions allow driving from the wheelchair — ask about this if caregiver driving isn't an option

Insurance coverageMedicare does not cover van conversions, but some state vocational rehabilitation programs and VA benefits may help. Many conversion companies offer financing.

General Travel Tips

Plan extra time for all transfers and security
Bring medications in carry-on luggage
Carry a letter from your doctor explaining your condition and equipment
Research medical facilities at your destination
Download TMA's emergency resources to your phone
Keep the Myositis Emergency Card in your wallet
Bring backup supplies for all medical equipment

Emergency Preparedness While Traveling

When traveling with IBM, you may end up in an ER far from your regular doctors. ER physicians almost never see IBM — it's rare enough that most have never encountered it. Without context, they may make wrong assumptions (e.g., treating it like regular polymyositis with high-dose steroids, which don't work for IBM and can cause harm). TMA's emergency resources solve this problem.

TMA Emergency Resources Kit

Download the full kit from myositis.org — it includes three essential documents:

Myositis Emergency Card

A wallet-sized card documenting your diagnosis, current medications, allergies, emergency contacts, and key medical details. Hand this to ER staff immediately upon arrival — it gives them the critical context they need in seconds.

"Before You Dial 911: The 411 on Myositis in the ER"

A one-page guide written specifically for emergency room physicians. It explains what myositis is, why standard treatments like high-dose steroids don't work for IBM, and critical considerations: the patient may need their BiPAP/ventilator settings matched, dysphagia means aspiration risk during any sedation, CK levels may be normal despite active disease, and EMG findings can be misinterpreted. Keep copies in your wallet, phone, luggage, and with your travel companion.

"My MyoHistory" Form

A pre-filled form that tells your medical story — when symptoms started, how the disease has progressed, what treatments you've tried, what works and what doesn't, your current equipment needs, and your care team's contact information. When you can't speak for yourself or time is critical, this form speaks for you.

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Download TMA Emergency Resources Kit

myositis.org — Free PDF download. Print and carry all three documents.

Print multiple copiesKeep these documents in: your wallet, phone (photo or PDF), checked luggage, carry-on, hotel room, and with your travel companion. For wheelchair users, store copies in the wheelchair's storage compartment as well.

Before You Travel

Research hospitals and ERs at your destination — academic medical centers with neuromuscular programs are best
Inform your travel companion about your condition, equipment, and emergency needs
Carry copies of all prescriptions, medical records, and insurance information
Save TMA's emergency hotline number in your phone: 800-821-7356
Bring backup supplies for all medical equipment (batteries, tubing, supplies)

Travel Tips for Advanced IBM