I started my channel a couple of months ago, and I haven’t shared my story with EDS yet. So take a dive with me into what Ehlers-Danlos Syndrome is, how I got my diagnosis and what my particular symptoms are. I hope this is helpful to anyone going through something similar.
Short educational video about Ehlers-Danlos syndrome: types, symptoms and treatment. In next videos I will discuss further each characteristic. Hope you learn!
I do not own the music rights. The information in the video does not substitute for the advice of a medical professional.
For Spanish version: https://youtu.be/5RqcPaHiOls
For more information:
http://ehlersdanlos.org.es/ (Spanish)
http://rarediseases.org/rare-diseases/ehlers-danlos-syndrome/ (English) Video Rating: / 5
An overview of the Ehlers-Danlos syndromes, including discussion on the classification, clinical presentation, diagnostic criteria, treatment, and prognosis.
Website of the Ehler-Danlos Society: https://www.ehlers-danlos.com/what-is-eds/
Channel of Izzy Kornblau, a prolific YouTuber with EDS (great information from a patient’s perspective): https://www.youtube.com/c/IzzyKornblau/videos
The 2017 International Classification of the Ehlers-Danlos syndromes (includes full diagnostic criteria): https://onlinelibrary.wiley.com/doi/full/10.1002/ajmg.c.31552
The existence of an association between EDS, dysautonomia (esp. POTS), and mast cell activation syndrome has been recently proposed. Its existence is controversial. Unfortunately, most of the relevant scientific literature is behind a paywell, but here are a few papers which are not:
Paper on the possible connection between dysautonomia and EDS: https://onlinelibrary.wiley.com/doi/10.1002/ajmg.c.31951
Paper on the possible connection between mast cell disorders and EDS: https://onlinelibrary.wiley.com/doi/10.1002/ajmg.c.31555
And a page from the Ehlers-Danlos society on mast cell disorders and how they might be associated with EDS: https://www.ehlers-danlos.com/2017-eds-classification-non-experts/mast-cell-disorders-ehlers-danlos-syndrome-2/
Clinical research, education and treatment for Ehlers–Danlos syndrome (EDS), a group of inherited connective tissue disorders for which there is no cure, took a significant step forward with the establishment of the Ehlers-Danlos National Foundation Center for Clinical Care and Research at GBMC’s Harvey Institute for Human Genetics.
The Ehlers-Danlos National Foundation (EDNF) supports a virtual center at Greater Baltimore Medical Center (GBMC) under the direction of Clair Francomano, MD, GBMC’s Director of Adult Genetics. The Center provides comprehensive clinical care for patients, professional education for physicians, and develop research.
“To every patient, every time, we will provide the care that we would want for our own loved ones.” Video Rating: / 5
What does it look like when someone with and someone without EDS is tested on the EDS criteria?
*****OOPS I MESSED UP AND RENATA DOESN’T PASS THE FIRST CRITERIA LOL 😬. She would have needed 3 more points on the Beighton Score. AND I FORGOT TO INCLUDE THE KNEE HYPEREXTENSION 🤦♀️🤦♀️🤦♀️
NEW TO MY CHANNEL? START HERE!
My Ehlers-Danlos Syndrome Story: https://www.youtube.com/watch?v=zYt9jAO0WyQ
My knee surgery: https://www.youtube.com/watch?v=OmqOchgtdh8
The types of pain EDS causes me: https://www.youtube.com/watch?v=VkixrpRbTn0
Differences between EDS, HSD, Hypermobility: https://www.youtube.com/watch?v=nTAffLj-2cI
How to get a doctor to listen to you: https://www.youtube.com/watch?v=km17oL6i94s
Renata’s new song “Running With Knives” is out on December 6th!!
Spotify: https://rb.gy/hrer5g | Apple Music: https://rb.gy/btc0sc | Featured song: https://rb.gy/eevvuz
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WANT TO HELP CAPTION MY VIDEOS?
Please go to my video page https://bit.ly/2p1lzqJ and click on a video that DOESN’T say CC under the view count. Once watching the video, click those three dots just below the right side of the video and click “add transcripts.” From there you can add them! Thank you so much to everyone who helps!!!!!!!!
WHAT’S EHLERS-DANLOS SYNDROME?
EDS is a genetic connective tissue disorder that causes certain mutations to aspects or types of connective tissues and results in connective tissue that is abnormally weak, fragile, and stretchy. Connective tissue is found in all parts of the body, including your organs, ligaments, and joints. As a result, people with EDS can be affected in all of these areas, as well as more. The most common symptoms and co-morbidities include pain, dysautonomia, dislocations, GI tract dysmotility, severe joint instability, and many more. The disorder is somewhat rare, estimated to affect around 1 in every 5,000 people. However, it’s speculated by many to not be as rare as we once believed.
