Even if you haven’t ever experienced anaphylaxis, if you have mast cell disease you are at risk of having an anaphylactic reaction to a known or unknown trigger, such as an insect sting or a certain food or medicine.
Since this disease is so unpredictable, my doctor advised me that it’s a good idea to be proactive and one of the many ways to do that is to get a Medic Alert bracelet. It was one of the first things I did for myself after I was diagnosed and prescribed my epipens.
I realize now the very real risk I face of dying from a bee or wasp sting (based on previous reactions) or really anything that can trigger anaphylaxis in me because I have mast cell disease.
I also have fainting and seizures so knew I needed a Medic Alert bracelet in case of an episode, but I had never had one before and I didn’t know what to put on it. Luckily the great folks over at the Mastocytosis Society have put together a great guideline and tips for purchasing the right piece of jewelry, too.
Here is what they recommend putting on your Medic Alert bracelet. This is written more for people with mastocytosis but you can easily modify it for mast cell activation syndrome, like I did:
MedicAlert Bracelet Engraving numbered by line:
- Line 1 CALL NOW
- Line 2 MASTOCYTOSIS
- Line 3 ANAPHYLAXIS
- Line 4 DRUG ALLERGIES
- Line 5 NEEDS EPIPEN
I changed mine a bit to fit all of my own personal emergency medical needs.
It’s always a good idea to put ANAPHYLAXIS and ALLERGIES (Drug, food, etc) along with MAST CELL DISEASE so they understand these all may be related. If you have seizures, like I do, then it’s important to put that, too. If you have other conditions or are on certain medications, you need to figure out how to fit as much as you can on those lines and that can take a bit of creativity.
It’s also a good idea to keep an ER Brochure and ER Protocol packet with you at all times, too, because many doctors have never heard of mast cell disease so just having it written on your Medic Alert bracelet doesn’t tell them everything they need to know in an emergency situation.
You can find these and other helpful MCAD forms for both you and your doctor, including an emergency wallet card I’ve made especially just for those of us with mast cell disease, by clicking >>> here.