Syndrome | Self Treatment

Archive for the tag: Syndrome

Jan 24

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

diseases admin Tags: “It, EhlersDanlos, Like, Syndrome, Tornado”
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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.

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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)

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Dec 17

Ehlers-Danlos syndrome (Year of the Zebra)

diseases admin Tags: EhlersDanlos, Syndrome, Year, Zebra
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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.

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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
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Nov 28

Managing Ehlers-Danlos syndrome: a physician's perspective

diseases admin Tags: EhlersDanlos, Managing, perspective, physician&#39s, Syndrome
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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.
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Jul 08

What is Ehlers-Danlos Syndrome? | My EDS Story

diseases admin Tags: EhlersDanlos, Story, Syndrome
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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
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Mar 06

What is Ehlers-Danlos syndrome? – Educational Video

diseases admin Tags: Educational, EhlersDanlos, Syndrome, Video
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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)
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Aug 10

The Worst Symptoms of Ehlers Danlos Syndrome || EDS Awareness Month 2021

diseases admin Tags: 2021, Awareness, Danlos, Ehlers, Month, symptoms, Syndrome, Worst
No Comments »

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

If you liked this video please subscribe to my channel 🙂

You can also find me on other social media:

Instagram: https://www.instagram.com/ChronicallyJenni
Facebook: https://www.facebook.com/ChronicallyJenni
Twitter: https://www.Twitter.com/ChronicJenni
My Support Group: https://www.facebook.com/groups/785786465114178/
Email: chronicallyjenni@gmail.com
Blog: https://www.chronicallyjenni.com
Amazon Store: https://www.amazon.co.uk/shop/chronicallyjenni

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!

You can support my content by:
Buying me a virtual Coffee at https://www.buymeacoffee.com/chronicjenni
You can also get a membership for extra Chronically Jenni content

Taking a free trial of audible audiobookshttps://www.amazon.co.uk/Audible-Membership/dp/B00OPA2XFG?actionCode=AMN30DFT1Bk06604291990WX&tag=chronicallyje-21

Heading to my Amazon Store & purchasing from my POTS & EDS survival kits –
https://www.amazon.co.uk/shop/chronicallyjenni

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Jul 22

EDS, Ehlers Danlos syndrome & Fascia Therapy 🤔😳 find out what CAN be done!!

diseases admin Tags: &amp, Danlos, done, Ehlers, Fascia, find, Syndrome, Therapy, 🤔😳
No Comments »

Have you had your Myofascia system assessed?
We offer a Free Virtual 45minute Consult.
https://sterlingstructuraltherapy.com/
find out for yourself what results you could get; a giant majority of people experience 25%-75% relief in symptoms at their consult.
To learn more about Virtual Fascia Therapy click:https://sterlingstructuraltherapy.com/fascia/
We work Virtually with people from all over the globe 🌏 🙂 providing Virtual Fascia-base therapy that delivers exceptional results, all from the comfort of your home.
to find out more about SST click here:
https://sterlingstructuraltherapy.com/fascia/
call us directly at 602-908-7108
Video Rating: / 5

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

DONATE TO MUSC NORRIS LAB (EDS research in regenerative medicine): https://connect2.musc.edu/com

FOLLOW EVERYONE’S INSTAGRAM!
Sofia: @SofiaLuzbetak
Roman: @_rofenner_
Izzy (her channel): @izzy.kornblau
Deatra: @deatrabear
Katherine: @kg_singleton

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

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

Business inquiries ONLY: ikornblau15@gmail.com
✩ ✩ ✩ ✩ ✩ ✩

FTC Disclaimer: This is not a sponsored video.
As an Amazon Associate I earn from qualifying purchases
#eds #ehlersdanlos #hypermobileeds
Video Rating: / 5

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Feb 03

Ehlers-Danlos Syndrome – Trevor Wiberg – Patient Testimonial

diseases admin Tags: EhlersDanlos, Patient, Syndrome, Testimonial, Trevor, Wiberg
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

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Jun 04

Ehlers Danlos Syndrome: An Overview

diseases admin Tags: Danlos, Ehlers, Overview, Syndrome
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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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