Resources, videos, articles and more I’ve cultivated from a lifetime of living with Ehlers Danlos Syndrome!
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Resources for EDS
Articles
EDS Awareness Products
Resources for EDS
The best resources for learning about EDS!
The best resource to start with when you're diagnosed with EDS.
The Ehlers Danlos Society
A break down of all the types of EDS.
What is EDS?
A video about EDS and autonomic symptoms.
"Autonomic Dysfunction in Ehlers-Danlos and Related Syndromes" - Alan Pocinki, MD
A video introducing hEDS
Dr. Brad Tinkle presents “Introduction to Ehlers-Danlos Syndrome”
A webinar for coping with EDS pain.
Webinar: “Cognitive Behavioral Therapy as a Coping Skill for EDS”
A great place to find EDS chronic pain resources.
Home
EDS Research is crucial to understanding this complex system of syndromes!
Ehlers-Danlos Syndrome Research Foundation
I love The Mighty, it's a great resource and community!
Support for Living With Ehlers-Danlos Syndrome
Yoga is not the answer for a lot of people with hypermobility. However, if you're going to try it, make sure you're working with someone who understands hypermobility!
The Hypermobility Hub
A video from the UK talking about the difficulty of living with EDS.
EDS - The Raw and Honest Truth
Ring splints can help with finger dislocations
Silver Ring Splint Company | Medically Effective Hand and Finger Splints
A great community for people suffering from all sorts of chronic illnesses.
The Mighty. Making health about people.
Articles
Articles about EDS
CNN article about how this “rare” disease is really just rarely diagnosed.
This mysterious disease affects millions – why isn’t the medical profession paying more attention?
It's wild how many times we get told it's all in our heads…
Revenge of the gaslit patients: Now, as scientists, they’re tackling Ehlers-Danlos syndromes
People with hEDS may be more prone to Long COVID
People with hypermobility may be more prone to long Covid, study suggests
Why do so many more women seem to have EDS?
Accelerating Action for Women with EDS and HSD: Confronting Gender and Racial Bias in Healthcare
Personally, I was managing my EDS until COVID changed my life forever.
Overlapping Symptoms: EDS and Long COVID
Another article talking about this “invisibe” illness
‘Despite appearances, I finally realize I am not able-bodied’: author Daisy Lafarge on her ‘invisible’ disorder
There are a lot of ways EDS can show up in your da-to-day life. Here’s one that you may not expect!
Neurological and Spinal Manifestations of the Ehlers-Danlos Syndromes (for Non-experts) - The Ehlers Danlos Society
EDS Awareness Products
The animal for EDS is a zebra. It comes from the saying doctors are taught in med school for diagnosing issues: “when you head hoofs, think horses, not zebras.” Except, when it comes to us, we're the zebras!
Zebra EDS Sweatshirt
Becasue there always has to be a sticker for my mood….
waterproof matte vinyl EDS sticker
Zebra Strong clothing shop to support the Ehlers Danlos Society
