How to Find EDS Support When You Need It Most!

There’s nothing quite like somebody who “gets it,” when you’re feeling low because you have Ehlers-Danlos Syndrome (EDS).

Thankfully, there are organizations out there created by—and dedicated to—being there for people just like you. Once such organization is the Ehlers-Danlos Society. They’ve created a great resource for when you need to reach out and connect with someone about EDS: the EDS helpline email program.

Need Advice? To Vent? Helpful Resources?

The EDS email account is monitored by volunteers, fabulous people who take time out from their own busy lives to help someone else. They’re not able to provide medical opinions, but they know the practical challenges of living with EDS.

What Is EDS?

Ehlers-Danlos Syndrome is what’s known as a connective tissue disease. That means it affects the parts of the body made up of collagen. Collagen is a protein that the body uses to create elasticity and support (as every facial lotion commercial is quick to tell us!). EDS can cause:

  • Joints that move more than what’s considered standard for humans
  • Fragile skin that bruises easily and is slow to heal

What Problems Can EDS Cause?

EDS can cause severe pain and a feeling of being unstable on one’s feet. That, in turn, pretty much affects every aspect of a person’s life. And though there’s no cure, there are treatment options—but they don’t all work for everyone. In other words, there are plenty of reasons to need a shoulder to cry on or just lean on. That’s why the EDS helpline email is so, well… helpful!



EmpatheticBadass is a young-at-heart writer from Ohio (Go, Bobcats & The Marching 110!)) who is passionate about being a voice for the patient perspective.

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