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.

https://www.chronicpainpartners.com

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

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

ILC Chronic Pain & Ehlers Danlos Charitable Foundation

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.