Dr. David Saperstein speaks about Ehlers-Danlos Syndrome Symptoms and Treatments.
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Health check: Ehlers-Danlos Syndrome
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it’s that time of year again! EDS & HSD awareness month comes around quick! I’m back for my 5th annual series of Ehlers Danlos Syndrome & Hypermobility Spectrum Disorder Awareness Month videos with my dazzle of zebras from across the world. This year we have 27 zebras with 4 different types of EDS and HSD from 8 different countries sharing their experiences of what it’s like to live with these rarely understood conditions on a daily basis.
This is the first video in the 2021 series and we are talking about the worst symptoms of HSD, hEDS, cEDS & vEDS. From chronic pain and fatigue to dislocations there are huge lists of symptoms around but I want you to hear from people living with EDS on a daily basis what the worst symptoms they face are.
This video is dedicated in loving memory of Saarah Ahmed who wanted to take part in this series but sadly passed away before she could. Saarah lived with a very rare type of EDS called kyphoscoliotic EDS and she always wanted to raise awareness. Her family want her legacy to live on so please visit the links below to learn more about Saarah & her advocacy work.
https://www.instagram.com/saarah_ah_/
https://www.newsandstar.co.uk/news/19233319.saarahs-mission-still-impact/
https://www.thesun.co.uk/news/14676361/miss-universe-great-britain-finalist-dies/
I am fundraising for @TheEhlersDanlosSociety throughout May please head to https://www.instagram.com/chronicallyjenni/ to donate
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Huge Thanks to Everyone who was involved in this video:
Adriana, North California, USA,18, hEDS, IG: @adrianaedswarrior
Alexis, Alberta, Canada, 20 , hEDS, She/They, IG: @therarewanderer & @ggalexis12 Blog: https://therarewanderer.travel.blog/
Alyssa Maryland, USA, hEDS, IG: @spoonfullygraceful
Amber, Gloucester, UK, 18, HSD, They/Them, IG: @_prisma_art_
Amy Mckee, Yorkshire, UK, 22, HSD, She/her, IG: @voldycat7 YT: https://www.youtube.com/channel/UCX53OHDKpIY1A5GzWTZP2EA
Ayesha, Brighton, 33, hEDS, She/her, IG: @ayeshashasha777 YT: @AyeshaShaSha
Bradley, Victoria, Australia, 29, vEDS, he/him, IG: @veds_zebra
Caroline, Essex, UK, 35, hEDS, IG: @lilcaz10
Catie, Pennsylvania, USA, 25, hEDS, She/her, IG: @lifeasazebra & @sunflower.catie
Clara, Texas, USA, 21, hEDS, IG: @clara_and_arlo
Eleanor, Scotland, 22, hEDS
Eliza, London, UK, 24, hEDS, They/them, IG: @disabled_eliza
Emma, Kent, UK, 27, hEDS, She/her, IG:@ehoughton24601
Georgia, Cardiff, 22, heds, she/her
Jasper, Newcastle, UK, 26, hEDS, He/him Twitter: @queercanthear
Jeannie Di Bon, London, UK, hEDS IG: @jeannie_di
Jenni, Essex, UK, 25, hEDS, She/her, @chronicallyjenni
Jenny, Hampshire. UK, 32, hEDS, IG: @jennycole1998 YT: @JennyCole1988 Blog: http://jaffacat.co.uk/
Jill, The Netherlands, 27, hEDS IG: @jillhubersmooren
Kate, Northumberland, UK, 26, hEDS, IG: @katestanforth
Katya, London, UK, 26, hEDS, IG: @positivelychronictravels
Luca, Ferrara, Italy, 35, cEDS, he/him, IG: @tre8bre FB:@tre8bre.1985 YT: @tre8bre
Marisol, Mexico City, Mexico, 28, hEDS, She/her, IG:@solprni
Rachel, Essex, UK, 25, hEDS, IG: @racheleanneblog
Robin , Vancover, Canada, 29, hEDS, IG: @robinhahnsopran YT: https://www.youtube.com/channel/UC4pehIOiAYumddCdpPkVncA
Simon, Devon, UK, 42, hEDS & cEDS, He/him, IG: @the_bodyboarding_eds_pilot
Special Thanks to my amazing boyfriend Ian for helping with editing!
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Buying me a virtual Coffee at https://www.buymeacoffee.com/chronicjenni
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Taking a free trial of audible audiobookshttps://www.amazon.co.uk/Audible-Membership/dp/B00OPA2XFG?actionCode=AMN30DFT1Bk06604291990WX&tag=chronicallyje-21
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In this video, five people with hypermobile Ehlers-Danlos Syndrome run through the hEDS diagnostic criteria from 2017! Hypermobile EDS is a painful genetic connective tissue disorder that makes connective tissues abnormally weak, fragile, and stretchy, leading to chronic joint and muscle pain, joint instability and dislocations, dysautonomia, fatigue, and GI tract dysmotility, among so many other symptoms. While the diagnostic criteria help to diagnose, it barely scratches the surface of the impact of this disease.
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HEDS DIAGNOSTIC CRITERIA 2017: https://ehlers-danlos.com/wp-content/uploads/hEDS-Dx-Criteria-checklist-1.pdf
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WHAT’S EHLERS-DANLOS SYNDROME?
The Ehlers-Danlos Syndromes are a group of more than 13 genetic connective tissue disorders that make connective tissue 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 others. The most common symptoms and co-morbidities include chronic joint pain, dysautonomia, dislocations, GI tract dysmotility, and severe joint instability, among many others. The most common type (and the type that I have) is hypermobile EDS (formerly known as Type III), which is 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:
🧬 https://www.ehlers-danlos.com/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
NEW TO MY CHANNEL? START HERE!
☞ My Ehlers-Danlos Syndrome Story: https://www.youtube.com/watch?v=zYt9jAO0WyQ
☞ What to do if you think you have EDS? https://www.youtube.com/watch?v=zGJ1Ftpbvqk&t=347s
☞ 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
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#eds #ehlersdanlos #hypermobileeds
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Mayo Clinic Geneticist, David Deyle, M.D., discusses Ehlers Danlos syndrome. Topics include an overview of the condition, signs and symptoms, most common types, diagnosis, and treatment options.
A physician referral is required to be evaluated for Ehlers Danlos Syndrome at Mayo Clinic. Referrals can be submitted by contacting the Referring Physicians Office (800)533-1564 or online: https://www.mayoclinic.org/medical-professionals/provider-relations/refer-a-patient
Ehlers Danlos Syndrome is a group of genetic disorders that affect the connective tissue of the body. It affects about 1 in 5,000 people globally. Symptoms may include loose joints, stretchy skin, and abnormal scar formation. For more information about list of expert doctors, hospitals and ongoing clinical trials visit
https://www.xpertdox.com/disease-description/Ehlers%20Danlos%20Syndrome
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