“We don’t want to be invisible anymore”: EDS Stories Shared at the #ZebraStrong Rally
Photo courtesy of the Ehlers-Danlos Society

“We don’t want to be invisible anymore”: EDS Stories Shared at the #ZebraStrong Rally

On August 4th, the Ehlers-Danlos Society led the Zebra Strong Rally, which concluded the third day of the Ehlers-Danlos Syndrome Learning Conference in Baltimore, Maryland. Advocating for Ehlers-Danlos Syndrome The…

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Ehlers-Danlos Society Dazzles at the Zebra Ball
Performance of "It's Our Time," a song about the search for an EDS diagnosis.

Ehlers-Danlos Society Dazzles at the Zebra Ball

Recently, the Ehlers-Danlos Society held its second annual Zebra Ball at the EDS World Learning Conference in Baltimore, Maryland. The event fundraised for further support and awareness of Ehlers-Danlos syndrome…

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There is No Ehlers-Danlos Syndrome Nutshell, But Here’s an Overview of the Known Types
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There is No Ehlers-Danlos Syndrome Nutshell, But Here’s an Overview of the Known Types

Ehlers-Danlos syndromes (EDS) are a group of rare conditions that affect the connective tissue and can be inherited. Connective tissue lies between tissues and organs throughout the body and helps…

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Why Exactly do Ehlers-Danlos Syndrome Patients have Anxiety Disorders?
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Why Exactly do Ehlers-Danlos Syndrome Patients have Anxiety Disorders?

I'll start this article, like many others, by mentioning that although I'm convinced I know everything about everything because I minored in biology in college, I'm really not a doctor.…

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High Schooler Spreads Awareness by Sharing Her Rare Disease Story
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High Schooler Spreads Awareness by Sharing Her Rare Disease Story

I'm Celeste, and I'm sharing my story because too many ill people go undiagnosed and too many healthy people know nothing of it. Being chronically ill is like (for lack…

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Teenager with EDS Denied Financial Support for Neck Surgery
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Teenager with EDS Denied Financial Support for Neck Surgery

16-year-old Teenager Ciara Micks of Limerick, Ireland, tries to remain positive despite an unsettling situation regarding next steps to treat her EDS, Ehlers-Danlos Syndrome, reports Limerick Leader. Ciara deals with…

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The Good, the Bad, the Ugly: Talking about Every Aspect of Your Rare Disease
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The Good, the Bad, the Ugly: Talking about Every Aspect of Your Rare Disease

As I was reading a post about Ehlers-Danlos syndrome on Stanford Medicine's Scope blog, a particular line caught my eye. The author of the post writes about "the moment [EDS patients] open our eyes…

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Why Every Month Should Be Ehlers-Danlos Syndrome Awareness Month
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Why Every Month Should Be Ehlers-Danlos Syndrome Awareness Month

Did you ever get that weird feeling when you've arrived at the party, but almost all the guests have already departed? Yes, you are definitely late, late, late. That's how I feel…

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This Woman Has an Inspiring Way to Raise EDS Awareness
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This Woman Has an Inspiring Way to Raise EDS Awareness

Ehlers-Danlos syndrome (EDS) is incredibly diverse in its symptoms, and most of the time patients don’t have all of them at the same time. Additionally, it’s a spectrum condition so…

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