PPMD recently hosted a webinar about Fat Embolism Syndrome (FES), covering what FES is, what symptoms to watch for, and how to help keep people with dystrophinopathy safe and healthy. Four clinical experts shared practical tips on preventing falls, how to support bone health and decrease the risk of fractures, recognizing signs of FES after a fall and what to expect in the hospital.
Speakers included:
- Dr. Sarah Wright, Assistant Professor of Neurology and Rehabilitation, Children’s National Hospital
- Megan Iammarino, PT, DPT, Assistant Professor of Neurology, University of Texas at San Antonio
- Dr. Tyler Cunningham, Assistant Professor of Pediatric Cardiology and Pediatric Critical Care, University of Arkansas for Medical Sciences
- Dr. Neepa Gurbani, Associate Professor, Pulmonary and Sleep Medicine, Cincinnati Children’s Hospital Medical Center
Understanding FES and Protecting Bone Health – Dr. Sarah Wright
- FES can occur when fat from bone marrow enters the bloodstream, often after a fracture, blocking blood flow and affecting the lungs or other organs.
- Those with dystrophinopathy are at higher risk because of weaker bones, reduced muscle mass, and increased fat in the bone marrow.
- Bone health tips:
- Get annual calcium and vitamin D checks, and talk to your doctor about supplementing these levels if you’re low
- Consider medications to support bone density, like bisphosphonates, if fractures occur or risk is high
- Vamorolone may better protect bones than traditional steroids. Talk to your doctor about your steroid regimen and which choice is right for you.
- After a fall: Get imaging quickly, stabilize fractures early, and avoid long immobilization. Do not hesitate to seek emergency care if you are concerned about a potential fracture or FES symptoms.
Preventing Falls and Staying Safe – Dr. Megan Iammarino
- Falls are common, but you can reduce risks with planning and environment changes.
- Fall prevention recommendations by stage:
- Ambulatory: avoid overuse and fatigue
- Transitional: conserve energy, modify home and school spaces
- Non-ambulatory: use lift systems and safe transfer methods
- Focus on safety and independence at every stage.
Recognizing FES: When to Seek Emergency Care – Dr. Tyler Cunningham
- Watch for signs within 12–72 hours after a fall:
- Sleepiness, fever, mood changes, faster breathing, fatigue, red pinpoint rash (petechial rash)
- Emergency signs – go to the hospital immediately if you experience:
- Trouble breathing
- Confusion, seizures, or loss of consciousness
- Act quickly as early evaluation saves lives! Tell providers you’re concerned about FES and share your child’s baseline breathing and cardiac information.
How FES Affects Breathing – Dr. Neepa Gurbani
- FES often causes fast breathing, followed by low oxygen levels.
- Oxygen alone is not enough if breathing muscles are weak, so it’s important to ask for BiPAP or noninvasive ventilation. Never give oxygen without pressure support!
- Request blood gas testing to check carbon dioxide levels.
- Some individuals experiencing FES may need ventilator support, but most recover with proper care.
- Know your child’s baseline BiPAP and cough assist settings and stay in close touch with your care team. Bring your BiPAP and/or cough assist machines with you to the hospital.
For more information on FES and Emergency Care considerations, visit our website. As highlighted in the webinar, being prepared for an emergency is essential. Make sure to have your care materials ready! You can order an emergency wallet card and/or wheelchair card through our Order Support Materials page, and don’t forget to bring your PJ Nicholoff Steroid Protocol with you to the hospital.
Watch the Webinar Recording
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