A caregiver’s guide to fat embolism syndrome and DMD
Last updated Feb. 3, 2025, by Marisa Wexler, MS
Fact-checked by Patrícia Silva, PhD
Fat embolism syndrome is a condition that can affect people with Duchenne muscular dystrophy (DMD). It can develop after a bone fracture or trauma, and is considered a serious DMD complication. In some cases, it can even be life-threatening.
Caregivers can play a vital role in fat embolism syndrome management by helping patients take steps for prevention, watching for possible signs of this complication, and providing emotional support.
What is fat embolism syndrome?
An embolism is a blockage or obstruction in a blood vessel. A fat embolism occurs when droplets of fat molecules block the flow of blood in blood vessels.
A blockage can interfere with blood delivering much-needed oxygen and nutrients to the organs, which can lead to organ damage. Fat embolism syndrome, or FES, refers to a group of symptoms and health complications that can develop from one or more fat embolisms. FES is specifically defined by fat embolisms that cause difficulty breathing, neurological problems, and petechiae — small, bruise-like spots on the skin.
A fat embolism can affect anyone, but is most likely to occur when you break a bone, especially the pelvis or one of the long bones in the legs (the femur, tibia, and/or fibula). It’s thought that when a bone breaks, fat in the bone marrow can be released into the bloodstream. If the fat particles block blood flow, it can cause a fat embolism and lead to FES.
How FES affects people with DMD
Movement triggers biological signals that help to strengthen bones. For example, walking helps bones in the legs become stronger, but DMD symptoms include muscle weakness and reduced mobility. Because people with DMD are typically less mobile, they are often more likely to have weakened bones that are more prone to break and potentially lead to a fat embolism.
For decades, medicines called corticosteroids have been a standard part of DMD treatment. Corticosteroids have been proven to help preserve mobility and muscle strength in people with DMD, but, like any medication, there is a risk of side effects. Some of the most common side effects of corticosteroids include weight gain and weakened bones. These side effects, combined with the musculoskeletal risks from DMD, can set the stage for a fat embolism and FES.
In addition to the effects of corticosteroids, people with DMD are typically more likely than their peers to have orthopedic surgery, which may also increase the risk of FES.
It is generally thought FES in DMD patients is rare, though there isn’t an exact estimate of how common it is because many cases are not correctly diagnosed.
A 2024 review study found 24 cases of FES reported in people with DMD since the early 1990s. The ages ranged from 10 to 23 years and most were on corticosteroids. In all but one of the cases, FES developed after a main bone was broken. In most of the cases, the people were unable to walk and the broken bone, which lead to FES, was from a fall out of a wheelchair or scooter, or while being transferred.
Symptoms and complications of FES
FES symptoms usually develop one to three days after a broken bone or trauma, although sometimes they develop in just a few hours. The symptoms can be nonspecific and vary from person to person, which can make FES difficult to diagnose.
FES is classically characterized by three main symptoms:
- difficulty breathing, which may manifest as shortness of breath or rapid breathing
- changes in mental state or other neurological issues, which can include headache, confusion, agitation, lethargy, seizures, and coma
- small, bruise-like spots on the skin, known as a petechial rash.
In addition to these classic symptoms, FES also can cause a wide range of other complications. These can include:
- rapid heart rate (tachycardia)
- fever
- changes in vision
- yellowed skin and eyes (jaundice)
- low counts of blood cells (anemia) and platelets (thrombocytopenia)
- kidney problems.
FES treatment and management
There isn’t a standard treatment for FES. In general, FES treatment focuses on supportive therapy that tries to keep the person as healthy as possible while their body recovers. According to the Parent Project Muscular Dystrophy, about 4 of 5 FES cases resolve on their own.
It’s important the broken bone is immobilized or the fracture is stabilized as soon as possible, which may be done through surgery via plate osteosynthesis. This procedure involves using an orthopedic plate (a form of internal fixation) to fix the broken parts of the bone and help it heal.
Because FES is associated with difficulty breathing, which can be life-threatening, an important part of supportive care for FES is interventions to ensure a person can breathe and get enough oxygen to keep their organs healthy. This may require supplemental oxygen therapy or a ventilator (a machine that helps support breathing). Another possible intervention is extracorporeal membrane oxygenation (ECMO), which is when the blood is oxygenated outside the body.
Additional supportive therapy includes maintaining hydration and proper nutrition.
Some doctors have proposed using corticosteroids and/or blood-thinning medications to help in FES management, but there isn’t substantial evidence suggesting these interventions are effective. Another proposed intervention is the use of a vena cava filter, a device placed in the large vein that carries blood to the heart. The filter removes clots and reduces the risk of them traveling into the lungs to potentially help decrease the respiratory effects of FES, but more research is needed to support its effectiveness.
Caregiver support
Because there isn’t a standard treatment for FES, a crucial part of its management is prevention. Caregivers can provide vital support in preventing FES, especially by helping to avoid falls or trauma, which can lead to breaking a bone.
People with DMD who use a wheelchair should always wear a seatbelt to prevent falling. One way a caregiver can try to stop this from happening is by always making sure that they are correctly buckled in.
Caregivers also can play a key role in preventing falls when transferring a person with DMD from one place to another — e.g., from bed to wheelchair or vice versa. Strategies for safe transfers include moving the two places as close together as possible, transferring from a higher to lower place when possible, and asking for assistance or using medical devices to ensure transfers can be done safely.
Getting an early diagnosis of FES is important. Caregivers should be on the lookout for possible symptoms of FES, especially after an injury. If FES is suspected, caregivers should seek medical care immediately as FES is a medical emergency.
FES can be stressful. Caregivers play an invaluable role in providing their loved ones with emotional support while they are recovering. Caregivers also can help people with DMD work with their healthcare team to create a management plan that is right for them.
Resources for caregivers
There are several resources available to help caregivers for people with DMD.
Muscular Dystrophy News Today offers columns where people in the community share their experiences, forums in which people with DMD and caregivers can connect and share advice, and also news articles detailing the latest research related to DMD.
Other resources that offer support and educational information for DMD caregivers include:
- CureDuchenne
- Muscular Dystrophy Association
- Parent Project Muscular Dystrophy
- Jett Foundation
- Caregiver Action Network
- Action Duchenne (U.K.)
- Duchenne Family Support Group (U.K.).
Muscular Dystrophy News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
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