In case of an emergency
- Take your emergency card with you. This will let you and the emergency room staff know what to look out for.
- If you have a smartphone, there is also an app that you can download that has all of the emergency information on it.
- If you use a cough assist machine or breathing machines at home, take them with you to the emergency room.
- Take all of your medications with you to the emergency room.
- You must call your neuromuscular specialist and let them know that you have had an emergency. They can work with emergency room doctors to make sure that you receive the right treatment. Also call your heart or pulmonary doctors if you are having a heart or breathing emergency.
- If you take steroids every day, let the doctor know that you must not go more than 24 hours without taking steroids.
- If oxygen is needed, your carbon dioxide should be measured in the air that you breathe out or in your blood. Giving oxygen without measuring your carbon dioxide is very risky in Duchenne.
- If you have fractured a bone, or had a bump that may have caused a fracture, tell the doctor that you are at risk for Fat Embolism Syndrome or FES.
- In Duchenne, the bones have some fat inside. When a bone breaks, pieces of the fat are released and may get into the bloodstream. If the fat then travels to brain, lungs or heart, it can cause FES, which can be life threatening.
In case of a broken bone:
If you have a fracture, or a bump that could maybe cause a fracture, you should watch out for signs of Fat Embolism Syndrome or FES. These include difficulty breathing, pain in your chest or head and a change in your behavior, like confusion, dizziness or not acting like yourself. If any of these signs are noticed, go IMMEDIATELY to the emergency room. This is an EMERGENCY. Take information from the internet about FES and tell the medical staff that you suspect FES.