Ehlers danlos syndrome

Note: this page is focused on hEDS, the common hypermobile type.

Gastroenterology
When I know that the patient has hEDS it affects my management and treatment in several ways. First, I will make sure to screen them for hiatal hernia and hiatal hernia syndrome (for more detail see chapter 12 of my textbook – second edition) and ileocecal valve syndrome (for more detail see chapter 15 of my second edition). It tempers my expectations for results of treatment since hEDS presents key structural changes (“floppy” collagen). This not only creates instability of joints but also laxity of sphincters, the omentum, ligaments, and tendons, which often creates a life-long tendency for GI issues. I may review imaging reports to check for prolapse and tortuosity of the intestines. The presence of hEDS will inform my recommendations for bodywork personally and by other practitioners the patient may visit. Spinal manipulation using force (grade 5) should generally be reserved for rare situations. Myofascial work should also involve less force and shorter duration. Musculoskeletal techniques that preserve and enhance stability of joints, such as prolotherapy, platelet-rich plasma (PRP) injections, and toning exercises should be first choices.

If GI issues, avoid opiods. Makes sense, aren't they used to slow fast poopers' poops down?

High prevalence of celiac, citation in https://onlinelibrary.wiley.com/doi/pdf/10.1002/ajmg.c.31546

rheumatology

 * https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5209734/ - this article says EDS is more likely to be associated with rheumatological conditions. But at a skim, it seems like there's a flaw in their study.  Which doesn't mean the conclusion is wrong or anything. They looked at EDS patients with no workup, a partial workup, and a complete workup. They found that people with a complete workup were more likely than the average person to have rheumatic stuff going on.  But maybe the EDS patients without a complete workup didn't have a complete workup because they didn't have any issues?!  They may have addressed this in the study and I just didn't notice.

to avoid
citation: https://www.drugs.com/medical-answers/drugs-avoid-ehlers-danlos-syndrome-3559403/
 * anticoagulents
 * antiplatelets
 * fluoroquinolone antibiotics

Thought to look up medications to avoid because of "We now know to avoid certain antibiotics, minimize certain surgeries, and address potential immune issues, micronutrient and related GI problems, etc." in a comment at https://www.inspire.com/groups/eds-and-hsd/discussion/what-is-the-impact-of-heds-on-life-expectancy/

that don't work

 * local anaesthetic "they were commonly characterised as hysterics [because the anaesthetic didn't work]"

Nutrition
On average this section is sorted from oldest to newest citations.


 * https://thebloodcode.com/ehlers-danlos-syndrome-eds-testing-and-nutrition/

carnitine, coenzyme Q10, glucosamine, magnesium, methyl sulphonyl methane, pycnogenol, silica, vitamin C, and vitamin K) & a collection of papers that cite this hypothesis
 * Hypothesis: ok... well, if nutrition is a major issue here, why don't we supply the needed nutrients? (specifically calcium,


 * Gastrointestinal and nutritional issues in joint hypermobility syndrome/Ehlers–Danlos syndrome, hypermobility type. - "In the second part of this paper, a summary of possible nutritional interventions in JHS/EDS-HT was presented." See page 72 for TABLE V. Proposed Nutritional Supplementation


 * diet modifications


 * EDS dietician - was trained by an EDS dietician, so apparently these people exist.

hacks and assistive devices

 * finger splints - silver splints, thingiverse swan neck splints

psychology

 * autism
 * adhd

to-read list

 * https://anatomypubs.onlinelibrary.wiley.com/doi/pdfdirect/10.1002/dvdy.220