May is #EhlersDanlosSyndrome Awareness Month!

Gonna spend a little time this month talking about some of the less well-known issues people with EDS deal with. It’s commonly known for being “that bendy joint condition” but that’s only one of the symptoms.

Part of the reason EDS awareness is so important is because being treated like a hypochondriac is something most people with EDS deal with until their diagnosis (and even after, by those who don’t understand the condition).

I’ve been learning a lot more about Mast Cell Activation Syndrome (a common complication of EDS) this year and realizing it explains so many medical questions I’ve dealt with my whole life. Like why I feel like I have the flu when it’s hot out.

When I was a kid, I thought everyone felt extremely ill when it was hot and I was just a weakling for not being able to suck it up and deal with it like everyone else.

Understanding not everyone feels this way, and that I have a medical condition, explains so much and makes me feel less guilty for needing to ask for ice packs when someone’s house is too hot or needing to excuse myself to go indoors on a hot day.

Because I suspect if everyone felt like they literally got a sudden flu when it’s even a little warm, they wouldn’t want to be hot either.

More info about MCAS:
https://www.ehlers-danlos.com/2017-eds-classification-non-experts/mast-cell-disorders-ehlers-danlos-syndrome-2/

https://www.naughtylittlemastcells.com/what-is-mast-cell-activation-syndrome/

This thread brought to you by me wondering why I suddenly felt profoundly ill and heart rate shot up to 130...only to realize I just needed to take off my sweater.

MCAS is responsible for a lot of the “weird” and seemingly unrelated issues people with EDS have which is part of the reason it takes so long to figure out.

EDS affecting joints seem obvious. But people don’t always get how a “joint problem” can be related to food allergies, heat sensitivity, migraines, and a bunch of other stuff.

But since connective tissue is everywhere (not just in joints), connective tissue disorders are often multi systemic.