Many mast cell disease patients refer to themselves as “leakers” or “shockers” in various places on the web.
What do these terms mean?
Everywhere I go, I find patients talking on forums, blog comments, etc., using these descriptions and after a bit of research I think I finally understand the difference between a “leaker” and a “shocker”.
When our mast cells degranulate they dump out chemicals called mediators. They can decide to dump out these chemical mediators all at once, which can cause sudden anaphylaxis or toxic “shock” (both of which can be fatal):
OR, they can slowly just “leak” chemical mediators all day long, making the person chronically ill all the time without causing sudden anaphylaxis or toxic shock.
I would label myself a “leaker” since I’ve yet to use my epipens (knock on wood) and I haven’t been in full anaphylaxis, although I was headed there with a wasp sting a couple of years ago. I just get really sick and it lasts for days or even a week (or more!). There have been times I believe I was in mast cell induced toxic shock, though.
Can a person be both a “shocker” and a “leaker”?
Definitely, yes. Just because I am chronically ill from my mast cells leaking constantly, doesn’t mean I can’t still get sudden anaphylaxis attacks (or toxic shock) so I have to be prepared at all times with my trusty epipens and my Medic Alert bracelet. A fully charged cell phone nearby for dialing 911 is always a good idea, too.
Someone who shocks may or may not leak during the in-between times, so they may be perfectly healthy, or they might leak, too, and be sick all the time and then shock on top of it. And their episodes of shocking can occur from once or twice a year to once or twice a day (or more)(!).
This disease is so different for each of us and is unpredictable and can change overnight, apparently.
So whether you are a “shocker” or a “leaker” it’s important to be prepared for the worst with mast cell disease. Your family, friends and health care providers should also be made aware of the unpredictability of this disease and the risk of anaphylaxis.
Most people need to be taught what to do and we need to remind ourselves, too:
- use 1st epipen
- call 911
- use second epipen if necessary
We may be unconscious though so it’s important for someone else in our lives to be prepared to spring into action at any moment. It’s up to us to impart to them how important it is that they take our disease seriously.
First, though, we have to take it seriously!
On that note, I need to renew my Medic Alert bracelet subscription and check my expiration date on my epipens. It’s been around a year and I’m probably due for new ones!