{"id":7,"date":"2017-01-07T12:32:23","date_gmt":"2017-01-07T12:32:23","guid":{"rendered":"https:\/\/www.chronicpainpartners.com\/jackson-tn-eds-support-group\/articles\/"},"modified":"2017-04-12T13:41:38","modified_gmt":"2017-04-12T13:41:38","slug":"articles","status":"publish","type":"page","link":"https:\/\/www.chronicpainpartners.com\/jackson-tn-eds-support-group\/articles\/","title":{"rendered":"Jackson TN EDS Links of Interest"},"content":{"rendered":"
\"170112-fb-header-image\"<\/div>\n
\n

***** Reference Materials: ****<\/p>\n

SOCIETIES\/ ORGANIZATIONS:<\/span><\/strong><\/p>\n

The Ehlers Danlos Society (previously National Foundation – now an international Society)
\nhttp:\/\/www.ehlers-danlos.com<\/a><\/p>\n

Ehlers-Danlos Support UK
\nhttp:\/\/ehlers-danlos.org\/<\/a><\/p>\n

EDS Awareness
\nhttps:\/\/www.chronicpainpartners.com\/<\/a><\/p>\n

EDS Wellness
\nhttp:\/\/edswellness.org\/<\/a><\/p>\n

Ehlers-Danlos Network
\nhttp:\/\/www.ehlersdanlosnetwork.org<\/a><\/p>\n

EDSers United
\nhttps:\/\/www.edsers.com\/<\/a><\/p>\n

Center for Ehlers-Danlos Syndrome Alliance
\nhttp:\/\/www.CEDSA.org<\/a><\/p>\n

Hypermobility.org
\nhttp:\/\/hypermobility.org\/<\/a><\/p>\n

Inspire is\u00a0for People with Rare Diseases to \u00a0Find and Communicate
\nhttps:\/\/www.inspire.com\/<\/a><\/p>\n

Mastocytosis Society
\nhttp:\/\/tmsforacure.org\/patients\/mastocytosis_explained_6.php<\/a><\/p>\n

Dysautonomia International
\nhttp:\/\/www.dysautonomiainternational.org\/<\/a><\/p>\n

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.
\nhttp:\/\/www.chiarifund.org<\/a><\/p>\n<\/div>\n

 <\/p>\n

BASICS:<\/span><\/strong><\/p>\n

NEW 2017 American Journal EDS Publication from an International Consortium of EDS Experts
\nhttp:\/\/onlinelibrary.wiley.com\/doi\/10.1002\/ajmg.c.v175.1\/issuetoc<\/a><\/p>\n

Ehlers Danlos Info
\nhttp:\/\/ehlers-danlos.com\/ehlers-danlos-info\/<\/a><\/p>\n

Patient Support
\nhttp:\/\/ehlers-danlos.com\/patient-support\/<\/a><\/p>\n

MINIMUM Info for Medical Professionals
\nhttp:\/\/ehlers-danlos.com\/medical-professionals\/<\/a><\/p>\n

MYTHS AND FACTS
\nhttp:\/\/www.ehlersdanlosnetwork.org\/myths-facts.html<\/a><\/p>\n

 <\/p>\n

GREAT SUMMARY PAGES\/ OVERVIEWS:<\/span><\/strong><\/p>\n

** NEW DIAGNOSTIC CRITERIA AS OF 3\/15\/2017***
\nhttps:\/\/ehlers-danlos.com\/eds-diagnostics\/<\/a><\/p>\n

Description from National Organization for Rare Diseases
\nhttps:\/\/rarediseases.org\/rare-diseases\/ehlers-danlos-syndrome\/<\/a><\/p>\n

EDS factsheet
\nhttps:\/\/m.facebook.com\/groups\/152615741473177?view=permalink&id=1208044112596996<\/a><\/p>\n

EDS signs and symptoms
\nhttps:\/\/m.facebook.com\/groups\/152615741473177?view=permalink&id=1208045332596874<\/a><\/p>\n

Beighton & Brighton Scales (also available in Group Photo album – Resources)
\nhttp:\/\/edswellness.org\/\u2026\/the-beighton-score-for-hypermobil\u2026\/<\/a><\/p>\n

EDS DIAGNOSTIC CHECKLIST\/STAGES OF LIFE
\nhttp:\/\/ehlers-danlos.com\/wp-content\/uploads\/EDSinPracticeS.pdf<\/a><\/p>\n

EDS resources, intro and articles compiled
\nhttp:\/\/spoonsandstripes.tumblr.com\/\u2026\/what-is-ehlers-danlos-\u2026<\/a><\/p>\n

 <\/p>\n

VIDEOS\/PRESENTATIONS:<\/span><\/strong><\/p>\n

Extreme EDS Classical Type Symptoms
\nhttps:\/\/wn.com\/ehlers%E2%80%93danlos_syndrome<\/a><\/p>\n

Fantastic Webinars by EDS Specialists
\nhttps:\/\/www.chronicpainpartners.com\/webinars\/<\/a><\/p>\n

Plenty of great presentations by EDS Specialists! Many cutting edge and prior to publication
\nhttp:\/\/ehlers-danlos.com\/past-events\/<\/a><\/p>\n

 <\/p>\n

EDS AND PAIN:<\/span><\/strong><\/p>\n

\n

EDS AND PAIN AND ANESTHESIA LINKS
\nhttps:\/\/m.facebook.com\/groups\/152615741473177?view=permalink&id=1208027782598629<\/a><\/p>\n

EDS opiate resistance\/metabolism
\nhttps:\/\/m.facebook.com\/groups\/152615741473177?view=permalink&id=1207926015942139<\/a><\/p>\n

 <\/p>\n<\/div>\n

HIGHLY\u00a0COMORBID\u00a0CONDITIONS:<\/strong><\/span><\/p>\n

Great compilation mostly on hEDS & comorbidities (with a lot of symptom overlap)
\nhttp:\/\/www.ohtwist.com<\/a><\/p>\n

\n

MCAS & POTS
\nhttp:\/\/www.dysautonomiainternational.org\/\u2026\/a-tale-of-two-s\u2026\/<\/a><\/p>\n

Chiari FAQs
\nhttp:\/\/www.conquerchiari.org\/education\/chiari-faqs.html<\/a><\/p>\n

MCAS – POTS – EDS 2016 article
\nhttp:\/\/tinyurl.com\/Edsrs1<\/a><\/p>\n

EDS and Chronic Fatigue
\nhttps:\/\/www.ncbi.nlm.nih.gov\/pubmed\/16396727<\/a><\/p>\n

Chronic Fatigue Methodology found
\nhttp:\/\/www.sciencealert.com\/one-of-the-biggest-myths-about-chronic-fatigue-syndrome-just-got-destroyed<\/a><\/p>\n

Lipedema – Fat Disorders Research Society
\nhttp:\/\/www.fatdisorders.org\/fat-disorders\/lipedema-lipoedema-description<\/a><\/p>\n

Diagnosis Criteria for Lipedema
\nhttp:\/\/www.lymphedemapeople.com\/wiki\/doku.php?id=lipedema#differential_diagnosis_for_lipedema<\/a><\/p>\n

 <\/p>\n<\/div>\n

TIPS:<\/span><\/strong><\/p>\n

Tips for EDSers
\nhttp:\/\/spoonsandstripes.tumblr.com\/\u2026\/spoonsandstripes-image\u2026<\/a><\/p>\n

31 random (general) EDS “facts”
\nhttps:\/\/www.buzzfeed.com\/\u2026\/31-random-facts-about-ehlers-dan\u2026<\/a><\/p>\n

 <\/p>\n

\n

REFERENCES:<\/span><\/strong><\/p>\n<\/div>\n

Clinical Utility Gene Card Update (Official minimum diagnostic criteria and confirmed \u201cknown\u201d mutations
\nhttp:\/\/www.nature.com\/\u2026\/journ\u2026\/v21\/n1\/full\/ejhg2012162a.html<\/a><\/p>\n

\n

Ehlers-Danlos syndrome
\nhttps:\/\/rarediseases.info.nih.gov\/\u2026\/\u2026\/ehlers-danlos-syndrome<\/a><\/p>\n

Diagnosing EDS
\nhttp:\/\/hypermobility.org\/\u2026\/hypermobility-\u2026\/criteria-for-eds\/<\/a><\/p>\n

Genetic Disorder: Ehlers Danlos Syndrome
\nhttps:\/\/ghr.nlm.nih.gov\/condition\/ehlers-danlos-syndrome<\/a><\/p>\n

 <\/p>\n<\/div>\n

 <\/p>\n

\n

*****FACEBOOK GROUPS (Alphabetical order):******<\/strong><\/p>\n

Cannabis & Ehlers Danlos Syndrome (Info & Discussion)
\nhttps:\/\/www.facebook.com\/groups\/677786868979711\/<\/a><\/p>\n

Celebrities with Invisible Illnesses – a group for speculating which Celebrities may have connective tissue disorders etc
\nhttps:\/\/www.facebook.com\/groups\/1695551190657872<\/a><\/p>\n

Chronic Gamers
\nhttps:\/\/www.facebook.com\/groups\/1316854705053622\/<\/a><\/p>\n

Chronic Illness Sell & Trade
\nhttps:\/\/www.facebook.com\/groups\/1139420839510049\/<\/a><\/p>\n

Chronic Pain Support Group
\nhttps:\/\/www.facebook.com\/groups\/11864244228\/<\/a><\/p>\n

Complementary and Alternative Medicine for Ehlers-Danlos Syndrome
\nhttps:\/\/www.facebook.com\/groups\/725920100776897\/<\/a><\/p>\n

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)
\nhttps:\/\/www.facebook.com\/groups\/edsandaloe\/<\/a><\/p>\n

Ehlers-Danlos Christian Support Group
\nhttps:\/\/www.facebook.com\/groups\/712856975474671\/<\/a><\/p>\n

Ehlers Danlos Christian Safe Haven – Women Only
\nhttps:\/\/www.facebook.com\/groups\/669324583124307\/<\/a><\/p>\n

Ehlers Danlos & Pregnancy and more (should I or shouldnt I)
\nhttps:\/\/www.facebook.com\/groups\/1454456978189155\/<\/a><\/p>\n

Ehlers Danlos Support: Freely Discuss New Criteria
\nhttps:\/\/www.facebook.com\/groups\/266055177174991\/<\/a><\/p>\n

Ehlers Danlos Syndrome and the Military Family
\nhttps:\/\/www.facebook.com\/groups\/1261147160646263\/<\/a><\/p>\n

Ehlers-Danlos EDS\/POTS\/MCAD Support Worldwide
\nhttps:\/\/www.facebook.com\/groups\/598876153485778\/<\/a><\/p>\n

Ehlers-Danlos Syndrome (EDS) Medical Scientific Articles
\nhttps:\/\/www.facebook.com\/groups\/200753810005631\/<\/a><\/p>\n

Ehlers-Danlos Support Worldwide EDS\/POTS\/MCAD\/Chiari
\nhttps:\/\/www.facebook.com\/groups\/598876153485778\/<\/a><\/p>\n

Ehlers-Danlos Syndrome Closed Group (For those Diagnosed)
\nhttps:\/\/www.facebook.com\/groups\/EhlersDanlosSyndromeClosed\/<\/a><\/p>\n

Ehlers-Danlos Syndrome Public\u00a0Group (For those Not Diagnosed)
\nhttps:\/\/www.facebook.com\/groups\/1417037428584481\/permalink\/1417046915250199\/<\/a><\/p>\n

Ehlers-Danlos Syndrome Pregnancy Support and Info
\nhttps:\/\/www.facebook.com\/groups\/1726035151050108\/<\/a><\/p>\n

Ehlers Danlos Syndrome – Support & Discuss
\nhttps:\/\/www.facebook.com\/groups\/1559755797383062\/<\/a><\/p>\n

Ehlers Danlos SSD\/SSDI support
\nhttps:\/\/www.facebook.com\/groups\/eds.ssdi.support\/<\/a><\/p>\n

EDS Australia & NZ Supporting EDS\/POTS\/ME\/CFS\/Fibro\/MCAD\/Chiari\/ASD
\nhttps:\/\/www.facebook.com\/groups\/979304358808822<\/a><\/p>\n

EDS C.A.S.T. (Caregiver and Support Team)
\nhttps:\/\/www.facebook.com\/groups\/1938834516345790\/<\/a><\/p>\n

EDS life hacks (READ THE PINNED POST)
\nhttps:\/\/www.facebook.com\/groups\/edslifehacks\/<\/a><\/p>\n

EDS\/ME\/CFS\/FM\/POTS\/MCAD\/GP Chiari articles and info
\nhttps:\/\/www.facebook.com\/groups\/588817404473821<\/a><\/p>\n

EDS UK Men’s Support Group
\nhttps:\/\/www.facebook.com\/groups\/EDSUKmens\/<\/a><\/p>\n

Dysautonomia Support Group
\nhttps:\/\/www.facebook.com\/groups\/DysautonomiaSOS\/<\/a><\/p>\n

Friends With Vascular Ehlers-Danlos Syndrome
\nhttps:\/\/www.facebook.com\/groups\/127729143983649\/<\/a><\/p>\n

FODMAPS and Fructose friendly recipies
\nhttps:\/\/www.facebook.com\/groups\/FODMAPfriendlyrecipes\/<\/a><\/p>\n

Holistic Approaches to EDS
\nhttps:\/\/www.facebook.com\/groups\/313568438983778<\/a><\/p>\n

HMS & EDS Support UK
\nhttps:\/\/www.facebook.com\/groups\/1408104205901644\/<\/a><\/p>\n

Gastroparesis Support Group
\nhttps:\/\/www.facebook.com\/groups\/GastroparesisSupportGroup\/<\/a><\/p>\n

Good North American Doctors for EDS pots hashis RA etc etc
\nhttps:\/\/www.facebook.com\/groups\/1438285386415297\/<\/a><\/p>\n

Good Australian Doctors for EDS pots hashis RA etc etc
\nhttps:\/\/www.facebook.com\/groups\/287952358017187\/<\/a><\/p>\n

Good European Doctors for EDS pots hashis RA etc etc
\nhttps:\/\/m.facebook.com\/groups\/372374862916395<\/a><\/p>\n

Group for Parents of EDS & Hypermobility children
\nhttps:\/\/www.facebook.com\/groups\/290204814360045\/<\/a><\/p>\n

IV Intravenous access, PORTS and PICCS for POTS, EDS, ME\/cfs and FM
\nhttps:\/\/www.facebook.com\/groups\/1502494416657717\/?ref=br_tf<\/a><\/p>\n

Lipedema & KETO Way of Eating
\nhttps:\/\/www.facebook.com\/groups\/LipedemaKetoWOE\/<\/a><\/p>\n

Lipedema FasciaBlasters
\nhttps:\/\/www.facebook.com\/groups\/LipedemaFasciaBlasters\/<\/a><\/p>\n

Lipedema Liberated
\nhttps:\/\/www.facebook.com\/groups\/lipedemaliberated\/<\/a><\/p>\n

Lipedema Sisters, USA
\nhttps:\/\/www.facebook.com\/groups\/lipedemasistersusa\/<\/a><\/p>\n

LGBTQ Ehlers-Danlos!
\nhttps:\/\/www.facebook.com\/groups\/896875303721003\/<\/a><\/p>\n

Life with Ehlers Danlos Syndrome – A smaller group which allows for off topic posts – https:\/\/www.facebook.com\/groups\/102793226741244<\/a><\/p>\n

Lovely Lipedema Life
\nhttps:\/\/www.facebook.com\/groups\/1809280765764148\/<\/a><\/p>\n

Loving Life With Stage 1\/2 Lipedema
\nhttps:\/\/www.facebook.com\/groups\/StageOneTwoLipedema\/?ref=br_rs&qsefr=1<\/a><\/p>\n

Mast Movement
\nhttps:\/\/www.facebook.com\/groups\/MastMovement\/<\/a><\/p>\n

MCAD and related disorders
\nhttps:\/\/www.facebook.com\/groups\/207077049364043\/<\/a><\/p>\n

Men with Ehlers-Danlos Syndrome
\nhttps:\/\/www.facebook.com\/groups\/173542636161246\/<\/a><\/p>\n

PORTS\/PICC lines etc
\nhttps:\/\/www.facebook.com\/groups\/1502494416657717\/<\/a><\/p>\n

POTS
\nhttps:\/\/www.facebook.com\/groups\/PosturalOrthostaticTachycardiaSyndrome\/<\/a><\/p>\n

Pregnancy Zebras
\nhttps:\/\/www.facebook.com\/groups\/530465153810731\/<\/a><\/p>\n

Rainbow Zebras
\nhttps:\/\/www.facebook.com\/groups\/801022803309045\/<\/a><\/p>\n

Stiff Zebras – If you have muscle or joint stiffness as well or instead of hypermobility there is this group
\nhttps:\/\/www.facebook.com\/groups\/455374384560623\/<\/a><\/p>\n

Upright MRI Open MRI worldwide locations
\nhttps:\/\/www.facebook.com\/groups\/683158415164329\/<\/a><\/p>\n

vascular ehlers danlos syndrome uk
\nhttps:\/\/www.facebook.com\/groups\/519995778143653\/<\/a><\/p>\n

Wheelchair Users Keep Rolling On
\nhttps:\/\/www.facebook.com\/groups\/WheelchairUsersKeepRollingOn\/<\/a><\/p>\n

Zebra Politics
\nhttps:\/\/www.facebook.com\/groups\/187597718312207\/<\/a><\/p>\n<\/div>\n","protected":false},"excerpt":{"rendered":"

***** 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\u00a0for People with Rare Diseases to \u00a0Find and Communicate https:\/\/www.inspire.com\/ Mastocytosis […]<\/p>\n","protected":false},"author":1,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"footnotes":""},"class_list":["post-7","page","type-page","status-publish","hentry"],"_links":{"self":[{"href":"https:\/\/www.chronicpainpartners.com\/jackson-tn-eds-support-group\/wp-json\/wp\/v2\/pages\/7","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.chronicpainpartners.com\/jackson-tn-eds-support-group\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/www.chronicpainpartners.com\/jackson-tn-eds-support-group\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/www.chronicpainpartners.com\/jackson-tn-eds-support-group\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/www.chronicpainpartners.com\/jackson-tn-eds-support-group\/wp-json\/wp\/v2\/comments?post=7"}],"version-history":[{"count":24,"href":"https:\/\/www.chronicpainpartners.com\/jackson-tn-eds-support-group\/wp-json\/wp\/v2\/pages\/7\/revisions"}],"predecessor-version":[{"id":92,"href":"https:\/\/www.chronicpainpartners.com\/jackson-tn-eds-support-group\/wp-json\/wp\/v2\/pages\/7\/revisions\/92"}],"wp:attachment":[{"href":"https:\/\/www.chronicpainpartners.com\/jackson-tn-eds-support-group\/wp-json\/wp\/v2\/media?parent=7"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}