When you get a diagnosis of a rare disease, like Ehler-Danlos Syndrome (EDS), trying to learn about it can be overwhelming. Where do you even start?
Do you just start typing EDS into Google and see what happens?
NO! The answer is no.
The internet, while an incredibly useful tool, is also full of misinformation. And everyone has an opinion. EVERYONE. Moreover, everyone thinks that they’re right.
Just look at the comments section of literally anything, and you’ll see that.
So when you’re looking for information about EDS, who do you believe?
- The person who swears all drugs are made by the devil?
- The one saying only THIS drug will cure you?
- The blog detailing how horrible and painful it is and you are better off dead?
It can be hard to figure out. My advice? Take everything with a few grains of salt.
There are some places that are great to start: The National Institutes of Health, big research hospitals like the Mayo Clinic, and also foundations like The Ehlers-Danlos Society.
When you’re looking for answers to your health, you don’t want to be messing around.
Thankfully, this EDS survivor has come up with an incredible master list for EDS specific information. Don’t believe me? Just check out her page!
You’ll not only find many articles to help you get a better understanding of what EDS is and is not, you’ll also get to watch many videos, too. Hey, not everyone likes to read, and there’s no shame in that!
Plus she includes links that are relative to all chronic illnesses. This is especially true in the section about resources for emotional and mental support. It’s no secret that stress can wreak havoc when you have a chronic illness. But thankfully there are things you can do about it!
So if you’re new to EDS, or just interested in learning more, check out this incredible list and make sure you save it!
