Basic English Resources
Ehlers-Danlos Society
Conference presentations as slides and videos by renown EDS experts:
The latest classification, management guidelines and recent knowledge about comorbid conditions:
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
Dysautonomia International
Videos about POTS and other forms of dysautonomia
https://vimeo.com/dysautonomia
Jon Rodis
The advocate of all advocates
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
Kendra Neilsen Myles
EDS Wellness
Website
Personal Website
https://kendraneilsenmyles.com
UK & Canada
Ehlers-Danlos Support UK
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
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
(This is a developing site. I am happy to include your blog, YouTube channel or other resources here)
