Jackson TN EDS Links of Interest
***** Reference Materials: ****
SOCIETIES/ ORGANIZATIONS:
The Ehlers Danlos Society (previously National Foundation – now an international Society)
http://www.ehlers-danlos.com
Ehlers-Danlos Support UK
http://ehlers-danlos.org/
EDS Awareness
https://www.chronicpainpartners.com/
EDS Wellness
http://edswellness.org/
Ehlers-Danlos Network
http://www.ehlersdanlosnetwork.org
EDSers United
https://www.edsers.com/
Center for Ehlers-Danlos Syndrome Alliance
http://www.CEDSA.org
Hypermobility.org
http://hypermobility.org/
Inspire is for People with Rare Diseases to Find and Communicate
https://www.inspire.com/
Mastocytosis Society
http://tmsforacure.org/patients/mastocytosis_explained_6.php
Dysautonomia International
http://www.dysautonomiainternational.org/
A fairly new charity that started 2016. They provide small amounts of financial assistance to people with Chiari and related disorders, which include EDS. They have a detailed accountment of deposits and payments. 90% of what they take in is stated to be for aid, the rest is for charity expenses. No one working for the charity gets paid. They have quite a few fundraisers, which does include Amazon Smile, something that the Ehlers Danlos Society (formerly EDNF) does.
http://www.chiarifund.org
BASICS:
NEW 2017 American Journal EDS Publication from an International Consortium of EDS Experts
http://onlinelibrary.wiley.com/doi/10.1002/ajmg.c.v175.1/issuetoc
Ehlers Danlos Info
http://ehlers-danlos.com/ehlers-danlos-info/
Patient Support
http://ehlers-danlos.com/patient-support/
MINIMUM Info for Medical Professionals
http://ehlers-danlos.com/medical-professionals/
MYTHS AND FACTS
http://www.ehlersdanlosnetwork.org/myths-facts.html
GREAT SUMMARY PAGES/ OVERVIEWS:
** NEW DIAGNOSTIC CRITERIA AS OF 3/15/2017***
https://ehlers-danlos.com/eds-diagnostics/
Description from National Organization for Rare Diseases
https://rarediseases.org/rare-diseases/ehlers-danlos-syndrome/
EDS factsheet
https://m.facebook.com/groups/152615741473177?view=permalink&id=1208044112596996
EDS signs and symptoms
https://m.facebook.com/groups/152615741473177?view=permalink&id=1208045332596874
Beighton & Brighton Scales (also available in Group Photo album – Resources)
http://edswellness.org/…/the-beighton-score-for-hypermobil…/
EDS DIAGNOSTIC CHECKLIST/STAGES OF LIFE
http://ehlers-danlos.com/wp-content/uploads/EDSinPracticeS.pdf
EDS resources, intro and articles compiled
http://spoonsandstripes.tumblr.com/…/what-is-ehlers-danlos-…
VIDEOS/PRESENTATIONS:
Extreme EDS Classical Type Symptoms
https://wn.com/ehlers%E2%80%93danlos_syndrome
Fantastic Webinars by EDS Specialists
https://www.chronicpainpartners.com/webinars/
Plenty of great presentations by EDS Specialists! Many cutting edge and prior to publication
http://ehlers-danlos.com/past-events/
EDS AND PAIN:
EDS AND PAIN AND ANESTHESIA LINKS
https://m.facebook.com/groups/152615741473177?view=permalink&id=1208027782598629
EDS opiate resistance/metabolism
https://m.facebook.com/groups/152615741473177?view=permalink&id=1207926015942139
HIGHLY COMORBID CONDITIONS:
Great compilation mostly on hEDS & comorbidities (with a lot of symptom overlap)
http://www.ohtwist.com
MCAS & POTS
http://www.dysautonomiainternational.org/…/a-tale-of-two-s…/
Chiari FAQs
http://www.conquerchiari.org/education/chiari-faqs.html
MCAS – POTS – EDS 2016 article
http://tinyurl.com/Edsrs1
EDS and Chronic Fatigue
https://www.ncbi.nlm.nih.gov/pubmed/16396727
Chronic Fatigue Methodology found
http://www.sciencealert.com/one-of-the-biggest-myths-about-chronic-fatigue-syndrome-just-got-destroyed
Lipedema – Fat Disorders Research Society
http://www.fatdisorders.org/fat-disorders/lipedema-lipoedema-description
Diagnosis Criteria for Lipedema
http://www.lymphedemapeople.com/wiki/doku.php?id=lipedema#differential_diagnosis_for_lipedema
TIPS:
Tips for EDSers
http://spoonsandstripes.tumblr.com/…/spoonsandstripes-image…
31 random (general) EDS “facts”
https://www.buzzfeed.com/…/31-random-facts-about-ehlers-dan…
REFERENCES:
Clinical Utility Gene Card Update (Official minimum diagnostic criteria and confirmed “known” mutations
http://www.nature.com/…/journ…/v21/n1/full/ejhg2012162a.html
Ehlers-Danlos syndrome
https://rarediseases.info.nih.gov/…/…/ehlers-danlos-syndrome
Diagnosing EDS
http://hypermobility.org/…/hypermobility-…/criteria-for-eds/
Genetic Disorder: Ehlers Danlos Syndrome
https://ghr.nlm.nih.gov/condition/ehlers-danlos-syndrome
*****FACEBOOK GROUPS (Alphabetical order):******
Cannabis & Ehlers Danlos Syndrome (Info & Discussion)
https://www.facebook.com/groups/677786868979711/
Celebrities with Invisible Illnesses – a group for speculating which Celebrities may have connective tissue disorders etc
https://www.facebook.com/groups/1695551190657872
Chronic Gamers
https://www.facebook.com/groups/1316854705053622/
Chronic Illness Sell & Trade
https://www.facebook.com/groups/1139420839510049/
Chronic Pain Support Group
https://www.facebook.com/groups/11864244228/
Complementary and Alternative Medicine for Ehlers-Danlos Syndrome
https://www.facebook.com/groups/725920100776897/
Cusack Protocol (has been known to bring some relief to people with EDS, Ms Cusack doesn’t receive financial gain, however please consult your physicians)
https://www.facebook.com/groups/edsandaloe/
Ehlers-Danlos Christian Support Group
https://www.facebook.com/groups/712856975474671/
Ehlers Danlos Christian Safe Haven – Women Only
https://www.facebook.com/groups/669324583124307/
Ehlers Danlos & Pregnancy and more (should I or shouldnt I)
https://www.facebook.com/groups/1454456978189155/
Ehlers Danlos Support: Freely Discuss New Criteria
https://www.facebook.com/groups/266055177174991/
Ehlers Danlos Syndrome and the Military Family
https://www.facebook.com/groups/1261147160646263/
Ehlers-Danlos EDS/POTS/MCAD Support Worldwide
https://www.facebook.com/groups/598876153485778/
Ehlers-Danlos Syndrome (EDS) Medical Scientific Articles
https://www.facebook.com/groups/200753810005631/
Ehlers-Danlos Support Worldwide EDS/POTS/MCAD/Chiari
https://www.facebook.com/groups/598876153485778/
Ehlers-Danlos Syndrome Closed Group (For those Diagnosed)
https://www.facebook.com/groups/EhlersDanlosSyndromeClosed/
Ehlers-Danlos Syndrome Public Group (For those Not Diagnosed)
https://www.facebook.com/groups/1417037428584481/permalink/1417046915250199/
Ehlers-Danlos Syndrome Pregnancy Support and Info
https://www.facebook.com/groups/1726035151050108/
Ehlers Danlos Syndrome – Support & Discuss
https://www.facebook.com/groups/1559755797383062/
Ehlers Danlos SSD/SSDI support
https://www.facebook.com/groups/eds.ssdi.support/
EDS Australia & NZ Supporting EDS/POTS/ME/CFS/Fibro/MCAD/Chiari/ASD
https://www.facebook.com/groups/979304358808822
EDS C.A.S.T. (Caregiver and Support Team)
https://www.facebook.com/groups/1938834516345790/
EDS life hacks (READ THE PINNED POST)
https://www.facebook.com/groups/edslifehacks/
EDS/ME/CFS/FM/POTS/MCAD/GP Chiari articles and info
https://www.facebook.com/groups/588817404473821
EDS UK Men’s Support Group
https://www.facebook.com/groups/EDSUKmens/
Dysautonomia Support Group
https://www.facebook.com/groups/DysautonomiaSOS/
Friends With Vascular Ehlers-Danlos Syndrome
https://www.facebook.com/groups/127729143983649/
FODMAPS and Fructose friendly recipies
https://www.facebook.com/groups/FODMAPfriendlyrecipes/
Holistic Approaches to EDS
https://www.facebook.com/groups/313568438983778
HMS & EDS Support UK
https://www.facebook.com/groups/1408104205901644/
Gastroparesis Support Group
https://www.facebook.com/groups/GastroparesisSupportGroup/
Good North American Doctors for EDS pots hashis RA etc etc
https://www.facebook.com/groups/1438285386415297/
Good Australian Doctors for EDS pots hashis RA etc etc
https://www.facebook.com/groups/287952358017187/
Good European Doctors for EDS pots hashis RA etc etc
https://m.facebook.com/groups/372374862916395
Group for Parents of EDS & Hypermobility children
https://www.facebook.com/groups/290204814360045/
IV Intravenous access, PORTS and PICCS for POTS, EDS, ME/cfs and FM
https://www.facebook.com/groups/1502494416657717/?ref=br_tf
Lipedema & KETO Way of Eating
https://www.facebook.com/groups/LipedemaKetoWOE/
Lipedema FasciaBlasters
https://www.facebook.com/groups/LipedemaFasciaBlasters/
Lipedema Liberated
https://www.facebook.com/groups/lipedemaliberated/
Lipedema Sisters, USA
https://www.facebook.com/groups/lipedemasistersusa/
LGBTQ Ehlers-Danlos!
https://www.facebook.com/groups/896875303721003/
Life with Ehlers Danlos Syndrome – A smaller group which allows for off topic posts – https://www.facebook.com/groups/102793226741244
Lovely Lipedema Life
https://www.facebook.com/groups/1809280765764148/
Loving Life With Stage 1/2 Lipedema
https://www.facebook.com/groups/StageOneTwoLipedema/?ref=br_rs&qsefr=1
Mast Movement
https://www.facebook.com/groups/MastMovement/
MCAD and related disorders
https://www.facebook.com/groups/207077049364043/
Men with Ehlers-Danlos Syndrome
https://www.facebook.com/groups/173542636161246/
PORTS/PICC lines etc
https://www.facebook.com/groups/1502494416657717/
POTS
https://www.facebook.com/groups/PosturalOrthostaticTachycardiaSyndrome/
Pregnancy Zebras
https://www.facebook.com/groups/530465153810731/
Rainbow Zebras
https://www.facebook.com/groups/801022803309045/
Stiff Zebras – If you have muscle or joint stiffness as well or instead of hypermobility there is this group
https://www.facebook.com/groups/455374384560623/
Upright MRI Open MRI worldwide locations
https://www.facebook.com/groups/683158415164329/
vascular ehlers danlos syndrome uk
https://www.facebook.com/groups/519995778143653/
Wheelchair Users Keep Rolling On
https://www.facebook.com/groups/WheelchairUsersKeepRollingOn/
Zebra Politics
https://www.facebook.com/groups/187597718312207/