Living with Anaphylaxis, 5 Safety Planning Tips
Some people have anaphylaxis from a young age. Even with all that experience, I don’t know if one can ever get used to it? Although I have always had rashes and hives, I didn’t start having anaphylaxis until adulthood. Having both mast cell disorder and anaphylactic allergies I often experience anaphylaxis or anaphylactic-like symptoms (anaphylaxis is more than just your throat closing - but that is a different post). This only serves to muddy the waters. It gets very complicated at the pharmacy and when seeing new doctors, who aren’t sure whether to call 911, dispense medication, or if I may spontaneously combust before their eyes. Most often I just require the medications to manage the histamines... enough to calm an elephant sized mast cell.
In case you are new to the world of mast cells and the havoc they can cause here is a quick intro... Mast cells are located in the connective tissue throughout the body (Skin, GI tract, Respiratory epithelium...). They are responsible for allergic reactions, anaphylaxis, and house inflammatory mediators (histamine, heparin, cytokines...). Basically when they get angry (degranulate) they make a person feel very unwell and potentially evoke anaphylaxis (in some people). More detailed information here: https://www.frontiersin.org/articles/10.3389/fimmu.2015.00620/full
They are typically managed with antihistamines and mast cell stabilizers. This is very helpful for people like me who have anaphylactic allergies on top of mast cells that behave badly. [Side note: Mastocytosis is TOO MANY mast cells, while Mast cell activation disorder is mast cells behaving badly, treatment is similar.] I say this is helpful because when I accidentally come into contact with my allergen it slows down the reaction so I have time to intervene during the anaphylactic episode. However, were I not on any antihistamines and mast cell regulators I am pretty sure I wouldn’t be here writing this right now. We have to make sure we have a safety plan no matter our anaphylactic allergy. Whether it is something will may encounter on a day to day basis, seasonally or on a rare occasion. Here are the strategies I use to help keep safe with anaphylaxis.
5 Safety Planning Tips for Living with Anaphylaxis
Medic Alert Bracelet I am loyal to the brand because it has a special ID number with my file which includes, medications I am on, my allergies, brief medical history, my doctors info, and emergency person. When I got it, I was able to get a lifetime subscription, now there is an annual fee. If you can’t afford that, any ID bracelet with the allergy listed and “uses Epi-pen” will help. It is tempting to get pretty jewellery, but that is easily overlooked by first aiders who will be first on scene.
Tell your family, friends and coworkers Unless you really want to keep private about your medical information, it can be very helpful to share with the friends and coworkers you see regularly that you have an anaphylactic allergy and that you carry an Epi-pen. Remember to ask if they know how to use one so they can help you in an emergency.
Assess the Risk Before heading out know the risk to you. Will your allergen be present? How likely will you come into contact with it? Can you tell anyone about the risk? Can you reduce the risk? Is there an escape route? Did you discuss your first aid plan with anyone?
Take your antihistamines Discuss prophylactic antihistamines with your doctor. If you are going to a garden party and are allergic to bees, this may be an important time to use prophylactic antihistamines. Remember there are many second generation antihistamines to choose from that don’t include drowsiness - each one works a little differently with each person. You may have to trial a couple different ones to find the one that works best for you.
First Aid Plan Do you always carry your Epi-pen? Do your friends know where it is kept? Can they help you administer it? Do your friends know what to do? Key points to share with friends; order of operations: administer epi-pen first, then call 911, then follow other instructions from doctor (take additional oral antihistamines if safe to do so).
Bonus: Service Dog A Service Dog may not be for everyone, but if you are considering it check out the different facebooks groups and government pages for the regulations in your area. Even the smallest canine may be trained to detect your allergen and alert you to it’s presence, even in extremely small quantities. For example: gluten, food colour, starch in medication capsules...
We are entering the season of black and yellow flying stingy things. I just saw my first paper wasp queen of the year and thought... seasonal anaphylactic allergies... I am so glad I am not allergic to bees or other common insect allergens. I can imagine it must be terrifying to be allergic to a black and yellow in the summer, and to try and enjoy the outdoors! It may also bring to mind questions like “why do we even have wasps!?” The outdoor educator in me had to make an infographic to answer that, and to show the risk vs perceived risk of being stung. The bottom line is yes, wasps are higher on the jerk list. The can repeatedly sting and don’t give a hoot - on the flip side they arent out there stalking humans like deer flies! They just want to go about their day and protect their nest. If you find a nest call a professional in to remove it. Hint: yellow jackets use holes in the ground as their nests and paper wasps have the hanging grey piñata. Also, both are more aggressive in mid-late August and later due to a change in food source. If you are outside and don’t want the visitores, set up an offering station on the other side of the year FAR from you: pop, cut fruit and an open can of tuna.