This disease requires us to take precautions at every step and it’s vital that our doctors, nurses, dentists and all other health care providers are educated and up to date on how to handle us, especially in emergency situations.
I’ve created a handy wallet card to take with you to doctor and hospital visits (see below). I’ve also compiled a list of the forms you should have at all times if you have MCAS. These include things like the MCAS diet guideline, an activity log to track symptoms and triggers and ER protocols. I’ve placed asterisks (***) next to the ones I feel are the most important ones.
Most of these are from the awesome people at The Mastocytosis Society.
This is a two-page brochure that goes over the basics of mast cell disease and the special care we as patients need.
This seventeen-page guide is essential to have in case of a trip to the ER. It includes forms to fill out with your primary doctor to insure that you receive the best individualized treatment in an emergency situation. I keep mine updated in a folder in my car at all times just in case.
This one tells us what foods are generally safe and which ones aren’t. It also has a lot of other helpful information and I refer to it often.
This one tells you how to read food labels while trying to find “safe” foods that don’t trigger your mast cells. On this site you can find guidelines for individual food triggers, such as:
You can find more individual food allergy guidelines by clicking here.
This can help you track your symptoms and triggers and while I haven’t personally used it, it looks very useful.
This is a wealth of information for patients and carers. It focuses on the impact mast cell disease has on patients and also the gender bias that may hinder diagnosis and treatment for women.
If you know of any other resources or find broken links, please contact me using the form in the drop down under About at the top of each page.