Living With MCAS

Living with MCAS sounds doable.... till you realize, triggers change, symptoms change, even your diagnosis can change, and you have nothing more you can try/do, let's face it even finding a doctor is not happening... let's do it together.

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MCAS Resources

Mast Cell Activation Syndrome is hard to understand - as a community, let's put the pieces of the puzzle together.

MCAS

Mast Cell Activation Syndrome - a condition that causes mast cells to release an inappropriate amount of chemicals into your body.

Resources

MCAS is not a straightforward forward easy to explain chronic illness. So we are pulling great resources into one place to try and help you get to answers quicker.

Doctors

Not so easy to find for MCAS. We have a list of doctors and hope that you can get an appointment.

Triggers

We have a list of triggers but we would love for you to add yours so that it becomes common knowledge.

Symptoms

We all know our symptoms but we would love to make a list so all can see how much they vary.

Tips

We all have a lot of tips that we would love to hear and share. We would love to add yours so that it can help someone else.

Thank you!

Thank you can not be said enough. Trying to find answers has been so hard! Thank you for making it easier.

Medication

This definitely needs to come from a Doctor but when you have advice on what is working it is very helpful.

Articles/Blog

Here we go, the everyday living with MCAS from people who are living it!

By the Numbers

It is hard to get the numbers correct as not enough has been documented. But the population of people with MCAS is going up, triggers are massive and the symptoms vary and change (sometimes by the day).

17%

Affects 17% of the Population

This is what I read on Google but still not sure the numbers correct.

1000's+

Triggers

So many triggers, food, face and body lotions, make-up, fragrances, hot/cols, and even altitude. Read More

100's+

Symptoms

So many symptoms from a rash to a life-threatening anaphylactic reaction. Read More

Benefits of Community

Getting a whole community involved will hopefully help us get answers quicker.

There are so many of us and so many more just starting this journey. We need answers but what can we do when the answers don't come quick enough.... find a community and put the pieces together with everyone who is on and has been through this journey.

As a community let's put out good information and be as helpful as we can. I was given a lot of help from several communities but had to dig and find them. The goal here is to put all these awesome resources in one spot so that you can easily find what helps you the most.

MCAS Resources

Resources that have been very helpful. If you know other places please advise as we want to have as many resources as possible.

Here you can find Patient Resource Guide, Emergency Room Brochure, Emergency Alert Card, Child Advocacy in the Emergency Room Guide, as well as other guides. Find Here
Finding a doctor can be tough. Hope this helps.
Find the Top Mast Cell Activation Syndrome (MCAS) Experts and Specialists.  Find Here
StuffThatWorks helps people with chronic conditions figure out which treatments work best using crowdsourcing and AI. MCAS is one of the groups. Find Here
Checking the ingredients in your products has never been easier thanks to INCI DECODER. And we do need to check our makeup and bath/body ingredients! Find Here
Group of diverse people with arms and hands raised towards a han
Let's see how many resources we can pull into one place to make it easy for MCAS people to get information quicky.

Quick Tips

Quick, easy-to-find important, tips.

Advocating

How to advocate at an ER. The best thing to do is ask your Doctor for an MCAS Emergency Action Plan. Mine as allergies listed, what to do if... what meds to give and what test to take. Although, I did not see anyone in the ER really regard this as a necessity.

Or at Mast Cell Disease Society (TMS for a Cure) you can find emergency plan printables.

Find Here

Explanation of MCAS

MCAS – is a condition that causes mast cells to release an inappropriate amount of chemicals into your body.

Like an allergy but different. These chemicals wreak havoc in our bodies all the while changing the triggers (what sets off these chemicals), the chemicals change (what gives us the symptoms), so the symptoms change (from mild to anaphylactic).

Read More

Family/Friends

How to help your family and friends understand this unfamiliar territory.

Mast Cell Activation Syndrome - is a condition that causes mast cells to release an inappropriate amount of chemicals into your body.

We NEED our family and friends to understand.

Read More