Basic English Resources

EDS Awareness/Chronic Pain Partners

Webinars on absolutely any EDS-related topic by all experts but also original content written by and for the community under my lead as editor-in-chief.

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

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

Jon Rodis

The advocate of all advocates 

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

Disjointed by Diana Jovin

The most comprehensive book about all things EDS

Kendra Neilsen Myles 

EDS Wellness


Personal Website

UK & Canada

Ehlers-Danlos Support UK

ILC Foundation Canada

Films (EDS & Disability)

  • 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.”

Books (Disability)

  • 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.


Patientworthy – Rare Disease News

Pain News Network

Blogs & Social Media 

Rea Strawhill – ME (Blog)

Ryann Mason – 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


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


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)