Archive for the tag: EhlersDanlos

Ehlers-Danlos Syndrome: “It Hit Like a Tornado”

diseases No Comments »

Ehlers-Danlos Syndrome: “It Hit Like a Tornado”

Patricia Weltin of Beyond the Diagnosis talks about Elhers-Danlos syndrome, a rare disease that afflicts two of her daughters.

Ehlers-Danlos syndrome is a group of connective tissue disorders. There are various forms of Ehlers-Danlos. According to the NIH, there are numerous types of Ehlers-Danlos syndrome had been described and to date, over 19 genes have been associated with this disease. Most of those genes (COL1A1, COL1A2, COL3A1, COL5A1, COL5A2, ADAMTS2, FKBP14, PLOD1, and TNXB) are linked directly or indirectly to collagen production.

A common symptom in most people with Ehlers-Danlos syndrome is an unusually large range of joint movement (hypermobility). While often viewed as an interesting school yard trick, the loose joints are unstable and prone to dislocation and chronic pain.

Many people with the Ehlers-Danlos syndrome also have soft, velvety skin that is elastic and fragile. Organ damage and bone abnormalities can also be observed in these patients.

As Weltin explains in this video, her daughters grew up relatively normal but as soon as puberty began, aches, pains, and joint dislocations became more commonplace.

Help share more videos like this by donating to Bobby Jones CSF: http://ow.ly/RLvc50uoPdN
Dr. Anand Saggar describes the complexity of Ehlers-Danlos syndrome. Likening it to the mythological creature of the hydra, Dr. Saggar cautions that EDS has “many heads”, and it can affect individuals in vastly different ways.

Dr. Saggar goes on to explain just how common connective tissue disorders can be in patients with other disorders and even in the general population. He emphasizes the importance of genetic testing to confirm diagnoses of connective tissue disorders.

This lecture was presented at the 2019 London Roundtable provided in partnership with the Ehlers-Danlos Society, focusing on issues surrounding dysautonomia, connective tissue disorders, Chiari malformation and related syndromes. (2019)

For more information and educational materials, visit our website: https://bobbyjonescsf.org

Connect with Us:
Facebook: http://facebook.com/bobbyjonescsf
Twitter: http://twitter.com/bobbyjonescsf
Instagram: http://instagram/bobbyjonescsf
Video Rating: / 5

Ehlers-Danlos syndrome (Year of the Zebra)

diseases No Comments »

What is Ehlers-Danlos syndrome? Ehlers-Danlos syndrome is a group of related genetic conditions which are all caused by defective collagen synthesis. Normally, collagen provides strength and elasticity to our bodies, and it’s found in the skin, ligaments, tendons, and bones. In Ehlers-Danlos syndrome, defective collagen leads to stretchy skin, easy bruising, and joints that are super flexible.

Find our full video library only on Osmosis: http://osms.it/more.

Join millions of current and future clinicians who learn by Osmosis, along with hundreds of universities around the world who partner with Osmosis from Elseiver to make medical and health education more engaging and efficient. We have unparalleled tools and materials to prepare you for success in school, on your board exams, and as a future clinician. Sign up for a free trial at http://osms.it/more. If you’re interested in exploring an institutional partnership, visit osmosis.org/educators to request a personalized demo.

Follow us on social:
Facebook: http://osms.it/facebook
Twitter: http://osms.it/twitter
Instagram for med: http://osms.it/instagram
Instagram for nursing: https://osms.it/ignursing
TikTok: https://osms.it/tiktok
Linkedin: https://osms.it/linkedin

Our Vision: Everyone who cares for someone will learn by Osmosis.
Our Mission: To empower the world’s clinicians and caregivers with the best learning experience possible. Learn more here: http://osms.it/mission

Medical disclaimer: Osmosis from Elsevier does not provide medical advice. Osmosis from Elsevier and the content available on the Osmosis from Elsevier properties (Osmosis.org, YouTube, and other channels) do not provide a diagnosis or other recommendation for treatment and are not a substitute for the professional judgment of a healthcare professional in diagnosis and treatment of any person or animal. The determination of the need for medical services and the types of healthcare to be provided to a patient are decisions that should be made only by a physician or other licensed healthcare provider. Always seek the advice of a physician or other qualified healthcare professional with any questions you have regarding a medical condition.

© 2024 Elsevier. All rights reserved.
Video Rating: / 5

Ehlers-Danlos syndrome or EDS is a group of diseases with rare types I treat using a holistic approach. There is a more common type called hEDS, or hypermobility type that often goes undiagnosed for years but can explain lots of ‘weird’ symptoms from fatigue and brain fog to pain, in addition to being more flexible in some joints. But importantly, as we get older, even people with hEDS can get stiff, and this means they sometimes get missed and diagnosed instead with other things like chronic fatigue, fibro, or depression without a known cause. Often when I tell someone they have EDS and that it can explain a lot of their health issues, it’s a huge relief and can also help target treatments better, from cannabinoids to functional restoration programs and mitochondrial energy support.

#rarediseaseday #ehlersdanlossyndromes #EDS #ukmedicine #burnoutrecovery #cannabinoids #fibromyalgia #chronicfatigue #mentalhealth #mentalwellbeing #qualityoflifematters #naturalmedicine #botanicalmedicine #londonwellness #wellnesslondon #integrativemedicine #holisticdoctor #holisticmedicine #functionaldoctor #chronicpainawareness #womenshealth #mentalwellbeing #cannabinoidmedicine #resiliencemedicine
Video Rating: / 5

Managing Ehlers-Danlos syndrome: a physician's perspective

diseases No Comments »

This video is part of a series about a rare condition called Ehlers-Danlos syndrome, and how working as a multidisciplinary team can improve patient outcomes. The videos include interviews with a consumer, Tracey, and members of the multidisciplinary team that help to manage her condition. In this video, Dr Fraser Burling speaks about his experience working as a dual physician and rheumatologist in a multidisciplinary team to improve health outcomes for patients, including Tracey.

An international expert opinion was received on the treatment described in these videos. Download a copy of the opinion, written by Dr David Rabago from Penn State College of Medicine: https://www.hqsc.govt.nz/assets/Consumer-hub/Partners-in-Care/Publications-resources/Prolotherapy-review-letter-Dr-Rabago.pdf

This series of videos describe the experience and treatment of one consumer with Ehlers-Danlos Syndrome (EDS). Three members of the multidisciplinary team (MDT) involved in the care and treatment of this person are interviewed.

We acknowledge that a MDT can be much larger than this and the video does refer to the wider MDT as an important aspect of diagnosis, treatment and care of people with EDS.

Owing to the diverse and complex presentation of EDS, Rare Disorders NZ (formerly NZORD) has produced guidance (funded by the Ministry of Health) that will help health care professionals and providers to assess, diagnose and plan care for people with EDS.

Such guidance will hopefully promote discussion amongst health providers treating EDS, resulting in improved care and outcomes for consumers.

ACC sourced expert opinion about the evidence-base of prolotherapy being provided by Dr Burling. This expert opinion stated, “Clearly there is support for this in the literature.”

https://www.hqsc.govt.nz/assets/Consumer-Engagement/Resources/Prolotherapy-review-letter-Dr-Rabago.pdf

At an ACC review hearing, the reviewer considered this treatment had been excluded from the ACC prolotherapy assessment and that it was “a generally accepted means of treatment within New Zealand.” As such, ACC paid the cost of prolotherapy for the consumer during the entire rehabilitation programme. The prolotherapy treatment described by Tracey has had positive results for her.

There is mention throughout the videos of the prevalence of EDS and indication that this is varied; prevalence will depend upon the definition being used and this will determine the inclusion criteria.
Video Rating: / 5

What Causes Ehlers-Danlos Syndrome?

Watch the full episode: https://youtu.be/n6xlVsuBUk4

Grab our merch: https://normalcitizen.store/collections/sci-guys
Support the podcast on Patreon: http://patreon.com/sciguys

WATCH EVERY EPISODE:
https://bit.ly/2z3ifN0

SUBSCRIBE TO SCI GUYS
Apple Podcasts: https://apple.co/2TAPC3h
Spotify: https://spoti.fi/2H91rZu
YouTube: https://bit.ly/2Z7bWTk

JOIN OUR DISCORD
https://discord.gg/dT2nuvCvFD

FOLLOW THE PODCAST
Twitter: http://twitter.com/sciguyspod
Instagram: http://instagram.com/sciguyspod
Facebook: http://facebook.com/sciguyspod

Follow the SCI GUYS
@notcorry / @lukecutforth
Video Rating: / 5

What is Ehlers-Danlos Syndrome? | My EDS Story

diseases No Comments »

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.

Thanks for watching! Xxx

https://instagram.com/stelasulzdorf?utm_medium=copy_link

#EDS
#EhlersDanlosSyndrome
#MyEDSstory
#EDSdiagnosis
#EhlersDanlos
#HypermobileEDS
#BabeWithAMobilityAid
#MobilityAids
#HypermobileEhlersDanlosSyndrome
#ChronicIllness
#invisibleillness
#lupus
#AutoimmuneDisease
#healing
#disability
#dysautonomia
#HealthJourney
#LymeWarrior
#LupusWarrior
#Fainting
#Seizures
#POTS
#Dysautonomia
#ECGMonitor
#PosturalTachycardiaSyndrome
#POTSsyndrome
#MCAS
#AnxietyAndDepression
Video Rating: / 5

What is Ehlers-Danlos syndrome? – Educational Video

diseases No Comments »

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

The Ehlers-Danlos Syndromes (EDS)

diseases No Comments »

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/

#EDS #Ehlers-Danlos
Video Rating: / 5

Ehlers-Danlos Syndrome – Trevor Wiberg – Patient Testimonial

diseases No Comments »

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

Ehlers-Danlos Test On EDS vs. Non-EDS Person

diseases No Comments »

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

SUBSCRIBE FOR NEW VIDEOS EVERY WEEK:
https://bit.ly/2p1lzqJ

MERCHANDISE: https://teespring.com/stores/izzy-3
INSTAGRAM: https://www.instagram.com/izzykornblau/
@izzykornblau

P.O. BOX:
Isabelle Kornblau
PO Box 493
229 E 85th Street
New York, NY 10028

MY FAVORITE CHRONIC ILLNESS ESSENTIALS:
Pulse Oximeter: https://amzn.to/2p24Wes
Heating pad: https://amzn.to/2BDAERF
KT Tape brand: https://amzn.to/2VWQ9xs
Saltstick: https://amzn.to/2WxTBix
Nuun Hydration: https://amzn.to/2NAY9jW
Hyperice Massager: https://amzn.to/2PD69Ug
KT Tape: https://amzn.to/2Nw7sSr
Neck Ice Pack: https://amzn.to/33bVkMU
Pill holder key chain: https://amzn.to/2Wxwjcu
Ginger Chews: https://amzn.to/2NBRgii
Shoulder/back massager: https://amzn.to/36uWAgn
Jade Roller: https://amzn.to/2JEuiWU
Foot roller: https://amzn.to/32dcUyY
Jar Gripper: https://amzn.to/2PGczlA
Cooling Towel: https://amzn.to/34q2Vb4
Long handle shower sponge: https://amzn.to/2NbNo8G
Long handle shower loofah: https://amzn.to/2NAJW6B
Shower chair: https://amzn.to/2NEp3rc
Wooden shower chair: https://amzn.to/36xgGWW
Waterproof heart rate/fitness tracker: https://amzn.to/2oNJIAU
Fitbit: https://amzn.to/2pBBUSY
Paid links

FILMING STUFF:
Camera: Canon PowerShot G5X https://amzn.to/32IqTO4
Editing software: Final Cut Pro
Other camera’s I suggest: Canon PowerShot G7X Mark II https://amzn.to/2p1tIvi
Paid links

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.

MORE INFO ABOUT EDS:

EDS Types


https://bit.ly/2N95xTE

MORE INFO ABOUT POTS:
https://www.potsuk.org/what_is_pots2
https://cle.clinic/2p1lByR

MORE INFO ABOUT GASTROPARESIS:
https://mayocl.in/2BRQTuR

MORE INFO ABOUT MUSCLE TENSION DYSPHONIA:
https://bit.ly/2MLUYXI

As an Amazon Associate I earn from qualifying purchases
Video Rating: / 5