In case you haven't noticed, I'm kind of passionate about raising awareness and understanding for the Ehlers Danlos Syndromes (which I've been told is now the right way to say it.) I have this passion for five reasons.
Reasons 1-4: My kids. Katie (10), Nano (8), Anna (6), and Davy (4) all have Hypermobile Ehlers Danlos Syndrome or hEDS which they inherited from me. I want them to grow up in a world that I didn't grow up in...one that acknowledges and understands their condition and where doctors know what it is and how to treat it.
Reason 5: Everyone else with EDS. Most people with EDS spent the majority of their lives being told it's all in their heads when that couldn't be further from the truth. We're already at high risk for depression and suicide due to living in chronic debilitating pain and all of the other EDS symptoms. Not being believed or understood makes everything so much worse.
So, with that in mind, I put together a list of EDS resources, printables, freebies, awareness products, etc.
Freebies and Printables:
EDS Info Cards (business card size). You can either print your own or purchase the design pre-printed onto business cards here.
Parent's and Educator's Guide: Meeting the Needs of the Ehlers Danlos Child from The Ehlers Danlos Society
Other printable resources from the Ehlers Danlos Society
Brains and Bodies
The Invincible Summer
Ehlers-Danlos Worldwide
EDS - Zebras Need Zebras
Ehlers Danlos Syndrome Zebras
Parents of Children with Ehlers-Danlos and Hypermobility Syndrome
Ehlers Danlos Christian Support Group
Donate to Help Raise Awareness, Support, and Research:
Ehlers Danlos Society
A global community of patients, caregivers, health care professionals, and supporters, dedicated to saving and improving the lives of those affected by the Ehlers Danlos Syndromes and related disorders.
Ehlers Danlos Support UK
EDS UK strives to educate the medical community, promote continuity of care, improve accurate diagnosis, and provide information on specialist treatment and management of the condition. They also fund vital research to further understand EDS, including searching for the gene responsibility for the hypermobility type and working towards a cure.
James' Journey
A nonprofit organization created to raise awareness, support research, and understand the rare genetic disorder: Ehlers Danlos Syndrome (EDS)
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Books:
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Links to share:
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EDS Blogs and Websites:
Brains and Bodies
The Invincible Summer
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Online Support Groups:
Ehlers-Danlos Worldwide
EDS - Zebras Need Zebras
Ehlers Danlos Syndrome Zebras
Parents of Children with Ehlers-Danlos and Hypermobility Syndrome
Ehlers Danlos Christian Support Group
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Ehlers Danlos Society
A global community of patients, caregivers, health care professionals, and supporters, dedicated to saving and improving the lives of those affected by the Ehlers Danlos Syndromes and related disorders.
Ehlers Danlos Support UK
EDS UK strives to educate the medical community, promote continuity of care, improve accurate diagnosis, and provide information on specialist treatment and management of the condition. They also fund vital research to further understand EDS, including searching for the gene responsibility for the hypermobility type and working towards a cure.
James' Journey
A nonprofit organization created to raise awareness, support research, and understand the rare genetic disorder: Ehlers Danlos Syndrome (EDS)
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Merchandise:
Zebra Warrior shirts and mugs (includes "Mom of a Zebra Warrior", Grandma of a Zebra Warrior" and more)
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The Ultimate List of Ehlers Danlos Resources: https://bit.ly/2EEGjLO
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I hope you find these resources useful! Please let me know if there are any others I should add.
I am so happy to have found your site! My family had never heard of EDS until my baby sister died from a brain aneurysm. That was around 13 years ago. Where I'm from doctors hadn't heard of the condition and I had one actually think I was making it up! More people are becoming aware of EDS but we need to get more information out there and for more research to be done.
ReplyDeleteHello, I’m finding it hard to get tested for eds and will probably have to drive three hours to see a reputable geneticist for it. I looked into trying to get tested at home with a genetics test but they are so pricey. I believe if it gets easier to test for could raise awareness.
ReplyDeleteUnfortunately, that's often the case for people with EDS. There are so few doctors who know how to treat and diagnose it that we often have to drive long distances to find a good one. I wish you all the best on your journey!
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