Wonder Woman with Karina's face. A woman with long brown hair in fighting gear
Resources

Basic English Resources

Ehlers-Danlos Society

Conference presentations as slides and videos by renown EDS experts:

Past Conferences

The latest classification, management guidelines and recent knowledge about comorbid conditions:

2017 Classification Papers

EDS Awareness

Webinars on absolutely any EDS-related topic by all experts:

https://www.chronicpainpartners.com

Bobby Jones Foundation

Videos related to neurological complications of EDS like CCI and Chiari

Video Library

Dysautonomia International

Videos about POTS and other forms of dysautonomia

https://vimeo.com/dysautonomia

Jon Rodis

The advocate of all advocates

www.jrmarfan58.com 

Ehlers Danlos Marfan and Related CTDs New England/MA Support Group

https://www.facebook.com/groups/211190148990266/

Disjointed by Diana Jovin

The most comprehensive book about all things EDS

https://hiddenstripes.com

Kendra Neilsen Myles 

EDS Wellness

Website

Personal Website

https://kendraneilsenmyles.com

UK & Canada

Ehlers-Danlos Support UK

https://www.ehlers-danlos.org

ILC Foundation Canada

https://www.theilcfoundation.org

Films & Books

Behind the Visible – POTS Documentary 

We Are Visible – EDS Documentary 

Cinema Touching Disability – Disability Films

The reason I jump – A documentary about non-speaking autistic people

Introducing, Selma Blair – A documentary about Selma Blair’s life with MS

Bend or Break – A short documentary about a man living with EDS

Not going quietly – A documentary on advocacy, ALS and more

CODA – A series on a deaf family with a hearing daughter

Who Am I To Stop It:  “A documentary about isolation, art and transformation after brain injury by Cheryl Green and Cynthia Lopez.”

My Beautiful Broken Brain: “After suffering a stroke at age 34, a woman documents her struggles, setbacks and eventual breakthrough as she relearns to speak, read and write. 

Seven Songs For a Long Life: “The intimate story behind our changing relationship with death. A terminal diagnosis used to mean death within months. Modern medicine allows patients to live on for years. A passionate and touching film about uncertainty, about the future that faces all of us, following five patients who choose to sing their way through life.” 

Pain Warriors: A documentary that “examines the other side of the OPIOID CRISIS, that of under-treated pain among the patient population of Canada and the USA.”

My Lovely Wife in the Psych Ward: “A heart-wrenching, yet hopeful, memoir of a young marriage that is redefined by mental illness and affirms the power of love.” 

The Puzzle Solver: A Scientist’s Desperate Quest to Cure the Illness that Stole his Son: The story of one of the leading ME/CFS researchers in the world Ron Davis and his son, who lives with severe ME/CFS.

Haben, The Deafblind Woman Who Conquered Harvard Law: “The incredible story of Haben Girma, the first Deafblind graduate of Harvard Law School, and her amazing journey from isolation to the world stage.” 

​​​​​​​Laughing at my Nightmare: “With acerbic wit and a hilarious voice, Shane Burcaw’s Laughing at My Nightmare describes the challenges he faces as a twenty-one-year-old with spinal muscular atrophy.”

​​​​​​​Sitting Pretty: “A memoir-in-essays from disability advocate and creator of the Instagram account @sitting_pretty Rebekah Taussig, processing a lifetime of memories to paint a beautiful, nuanced portrait of a body that looks and moves differently than most.” 

Being Heumann – Audio Book: “Tony-award winning actress Ali Stroker reads the story of Judy Heumann – one of the most influential disability-rights activists in US history.”

​​​​​​​Demystifying Disability: What to Know, What to Say, and How to Be an Ally. 

The Pretty One: On Life, Pop Culture, Disability and Other Reasons to Fall in Love with Me.

Media

Patientworthy – Rare Disease News

Pain News Network

Blogs & Social Media 

Rea Strawhill – ME (Blog)

Ryann Kress – EDS, disability, LGBTQ, sex (Insta)

EDS Unplugged – EDS (Insta)

Christina Doherty – EDS (Insta)

Oh, TWIST – EDS (Blog)

Fight Like A Warrior – Chronic Illness

Sarah Wells – EDS, Chronic Illness (Blog)

Ash Fisher – Tissue Issues, Advice Column on Healthline

Beyond my Battle – Chronic Illness (Blog and Podcast)

Bridgette Scalisi – EDS, Deaf Community, LGBTQ

Podcasts

Dr. Linda Bluestein – EDS

Invisible Not Broken – EDS, chronic illness, disability

Hypermobility Happy Hour – EDS

Spoonie Village – Chronic Illness

Chronically Healing – Chronic Illness

Rare Disease Connection – Rare Diseases

Off Script Media – A collection of chronic illness podcasts

NORDpod – NORD’s podcast about all things rare disease

Wait, how do you spell that? – Patientworthy’s Podcast

Unlocking Bryson’s Brain – The journey of a father finding a cure for the rare condition of his son

YouTube

Jeannie Di Bon – EDS

Ryan Brown – EDS

Connect with others

Chronic Warrior Collective

(This is a developing site. I am happy to include your blog, YouTube channel or other resources here)