Miscellaneous EDS and HSD links

I have added this page to catch all the miscellaneous Ehlers-Danlos syndromes (EDS) and Hypermobility Spectrum Disorders (HSD) links and resources that I either can’t or haven’t managed to sort into another category under my main EDS Resources page. Updated December 12, 2023

Fellow bloggers and EDS writers:

• The Pulp (new in 2023, EDS collaborative newsletter)
• Holy Shit I’m Sick! A patient blog in German by Karina Sturm
• Pretty Ill – by EDSer Dr. Diana Driscoll
• Taming The Beast – on life with CRPS, Masto, EDS and more by the late Lili Wilde
• Down with the Pastryarchy – a site to support those with Celiac Disease and Gluten Sensitivity
• Miss Diagnoses – a funny blog by a chronically ill woman who has many common EDS comorbidities (and whom I suspect!)
• More Than Fat – a blog by an EDSer with lipedema
• Fat Zebra Theory by Sarah P. Diaz, Ph D. (fellow patient also)
• A story of life with Kyphoscoliotic EDS (EDS Type VI)
• I know I’m missing several, please apprise me at H2OhTWIST at gmail -dot- com

Miscellaneous other links not yet categorized

• Ehlers-Danlos Treatment Report (tracks latest research, studies and treatment articles for all forms of EDS)
• National Keratoconus Foundation
• Main medical characteristics of Loeys-Dietz syndrome
• About Mitochondrial Disease via Mito Action
• Does muscle strength change over time in patients with hypermobile Ehlers‐Danlos syndrome/ Hypermobility Spectrum Disorder? An 8‐year follow‐up study 2020 Coussens, Calder, Lapauw et al (inc Malfait)
• Improvement in chronic pelvic pain, orthostatic intolerance and interstitial cystitis symptoms after treatment of pelvic vein insufficiency December 2023 Smith, Sichlau and Rowe
• Celeste Cooper’s Site – A savvy RN with fibromyalgia
• The Spoon Theory (of energy management) by Christine Miserandino
• Handle With Care: Why Doctors Don’t Like the EDS Diagnosis Oct 2017 Jenrose
• The collαgen III fibril has a “flexi-rod” structure of flexible sequences interspersed with rigid bioactive domains including two with hemostatic roles 2017 Parkin, San Antonio, Savage et al
• Interview with Dr. Claude Hamonet  by the L’yonne Republicaine 2019
• How to Get on Social Security Disability for Ehlers Danlos Syndrome via Sleepy Girl Guide
• Study Finds 40% False Positives in Direct-To-Consumer Genetic Tests – 2018 Ryan Black
• [PubMed] A novel therapeutic strategy for Ehlers-Danlos syndrome based on nutritional supplements – 2005 article on a nutritional approach to EDS
• Shoulder Support Tricks – from a patient blog
• A New Disease Cluster: Mast Cell Activation Syndrome, Postural Orthostatic Tachycardia Syndrome, and Ehlers-Danlos Syndrome 2015
• Pseudo-psychiatric symptoms in EDS patients via Dr. Pocinki EDNF Conf 2013
• Leaky Gut, What It Is and What To Do About It (a common EDS comorbidity) Dr. Doni
• Job Accommodation Network new EDS guidelines for the workplace
• Dr. Nancy Mullan’s articles on MTHFR and the Methylation cycle
• Children with Ehlers-Danlos Syndrome and Airway Dysfunction ACR 2011
• Problems with the eyes in EDS patients Total Eye Care 2019
• A study of migraine characteristics in hypermobility syndrome a.k.a. Ehlers-Danlos Syndrome, hypermobility type Puledda, Vigano et al Neurological Sciences 36(8) · March 2015 
• Tenascin-X, Collagen and Ehlers-Danlos Syndrome 2013
• Medical Assistance Ultimate Directory by 3WithADHD blog (not EDS specific but still helpful!)
• Synthesis and secretion of collagen by cells of connective tissue, bone and dentin 1989
• The Empowered Patient: Ways You Can Get The Most From Your Medical Team EDNF 2014 Learning Conference presentation (Butler-Pierce, Weber)
• Why You Must Not Stretch Hypermobile Clients – The PTDC
• Joint mobility and Ehlers-Danlos syndrome (EDS), new data based on 232 cases, Harmonet et al France 2015 (shows more arguments against using Beighton 9 pt scale)
• 32 Ways to Stimulate Your Vagus Nerve And All You Need To Know About It via LifeHacks (affects much more than you might expect, check it out if haven’t)
• Dermal ultrastructure in low Beighton score members of 17 families with hypermobile-type Ehlers-Danlos syndrome. Hermanns-Lê T, et al. J Biomed Biotechnol. 2012.
• The association between Ehlers-Danlos syndrome – hypermobility type and gastrointestinal symptoms in university students: a cross-sectional study 2016 Fikree A et al.
• One Gene Mutation Links Three Mysterious, Debilitating Diseases 2016 (Mental Floss)
• Ehlers-Danlos Syndrome: More Than Just Stretchy Skin or Bendy Joints US News Wellness November 2016
• Complex Decongestive Physiotherapy (CDPT) – for lipo-lymphedema (google lipedema and or lipoedema – a common comorbidity we’re finding)
• Understanding Lipedema – a fat storage disorder, via Dr. David Amron, liposurgeon
• When it’s not just fat: discovering lipedema in women via NPR 2016
• Hall of Care – resource site for lipedema and other bariatric and mobility impaired patients
• Asthma and airways collapse in two heritable disorders of connective tissue – 2007 Morgan, Pearson et al
• Cystic kidneys associated with connective tissue disorders – 1997 Am J Med Gen
• Periodic Paralysis – a Journey
• Foot type analysis based on electronic pedobarography data in individuals with joint hypermobility syndrome/Ehlers-Danlos syndrome hypermobility type during upright standing. 2014 – Cimolin, Galli et al  (IOW: yes, you may have really high arches with EDS!)
• Ehlers-Danlos is associated with acute pancreatitis 1989 Sarra-Carbonell, Jiminez
• Recent studies of genetic dysfunction in pelvic organ prolapse: the role of collagen defects 2014 Lim, Khoo, Wong et al
• Pelvic organ prolapse and collagen-associated disorders 2012 Lammers, Lince et al
• Joint hypermobility, obstetrical outcomes, and pelvic floor disorders 2013 PubMed Leise R. Knoepp, Kelly C. McDermott, […], and Victoria L. Handa
• Brain injury unmasking Ehlers-Danlos syndromes after trauma: the fiber print 2016 Hamonet, Fredy, LeFevre et al
• People Who Are Double-Jointed Are More Likely to Be Anxious 2015 – Scientific American
• Targeted Deletion of Collagen V in Tendons and Ligaments Results in a Classic Ehlers-Danlos Syndrome Joint Phenotype 2015 Mei Sun, Brianne K. Connizzo, […], and David E. Birk
• Rare Pulmonary manifestation of Ehlers-Danlos syndrome 1995 Murray, Poulton, Saltarelli et al
• Meet Your Insterstitium, a Newfound “Organ” March 2018 Scientific American