With systemic mastocytosis (SM), there’s a good chance at some point you’ll find yourself in the ER to treat symptoms — and there’s also a good chance the doctors there won’t be familiar with SM. If you need to go to the emergency room, having a plan for once you get there can mean faster, better care when every minute counts.
What brings people with systemic mastocytosis to the ER?
Many things can bring people with SM to the ER. A trip to the ER can be the result of a severe symptom flare up, impacting the gastrointestinal system with intense abdominal cramps, nausea and diarrhea. Symptoms may also affect the cardiovascular system, causing concerning shortness of breath or heart palpitations.
But the most serious complication experienced by people living with SM is anaphylaxis. Anaphylaxis is a life-threatening allergic reaction; if it progresses into anaphylactic shock, you could go into cardiac or respiratory arrest. Anaphylaxis requires urgent treatment, which is why being prepared for the ER ahead of time can help.
Read more about SM signs and symptoms
What information should I share?
Hospital staff in the ER may not be familiar with systemic mastocytosis; if you are unable to describe your medical history and care needs, having information on SM at hand can help ensure your doctor provides the best treatment.
It’s recommended to carry clear information on your medical history with you. This could be a medical bracelet or necklace, with additional information in your wallet or bag.
To ensure you receive the best care as fast as possible, this is the information you ideally need to make available:
- A full medical history, including confirmation of your SM diagnosis.
- A detailed list of medications, including drugs to use and to avoid.
- A comprehensive summary of your identified allergies and symptom triggers and associated symptoms, including the kind of symptom, the severity and duration.
- Your emergency contacts, including family members and medical providers.
If possible, take a family member or close friend who knows your medical situation with you to the ER. They can help advocate for your needs.
If you are able to explain your medical situation, certain standard phrases can help staff understand your urgent need for care. Consider memorizing one before an emergency, to help it come to mind when you need it. An example is:
“I have systemic mast cell disease and I am at a high risk of anaphylaxis. I need to be treated immediately.”
The more information you can supply, the better.
How else should I prepare for emergencies?
Carry two doses of epinephrine with you at all times to protect against the life-threatening effects of anaphylaxis. However, even after deploying the two doses, it is essential to call emergency services and be evaluated by a medical team. An EpiPen can buy you time, but it doesn’t mean all danger has passed; your reaction may return again hours later, and you need to be assessed and monitored by healthcare professionals even if you think you’re OK.
While carrying epinephrine is great, having an emergency medical kit is even better: These can provide more resources to help calm a flare-up.
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