May is EDS/HSD Awareness month. Often there’s a lot of misunderstanding about what that means. The definitions have changed so much over the years and it can be an alphabet soup of acronyms, so let’s break it down here.
EDS=Ehlers-Danlos Syndrome: a connective tissue disorder that can show up in many different ways. Pretty rare, and the prevalence depends on subtype! About 1 in 5000 people have it, there are 13 subtypes, most of which can be diagnosed through gene tests. The EDS Society is an amazing resource and has much more info.
hEDS=hypermobile EDS, the most common type of EDS. Genes for hEDS have NOT yet been identified, but the HEDGE study is underway and more info is forthcoming…
HSD=Hypermobility Spectrum Disorder. Formerly called Joint Hypermobility Syndrome (JHS). HSD is not rare, although getting a formal diagnosis is challenging. One study found that 1/500 people had a formal diagnosis of HSD.(1) Some people with HSD have mild symptoms, others have profound impairments. Per the EDS society “HSD and hEDS can be equal in severity, but more importantly, both need similar management, validation, and care.”
Here’s the issue—most of the gastrointestinal literature mixes EDS and HSD. If you read articles, 2-3% of the general population meets the HSD criteria—and those same papers say that 98% of people have GI symptoms (!!!!!) (2)
Put those pieces together, this should be something every medical, nutrition and health professional pays attention to. But since EDS is regarded as rare, many medical professionals don’t devote the time and training to taking care of people on the EDS/hypermobility spectrum.
Yes, nutrition counseling is different for EDS/HSD patients. And so is most everything else. Most people with EDS & HSD have multiple GI disorders, often POTS, are more likely to have fibromyalgia and sometimes mast cell disorders, too. (2,3) Of course, the physical limitations of EDS and HSD and fatigue may also make food prep challenging, adding additional layers of complication.
My perspective–I was diagnosed with EDS 18 years ago, and then reclassified as having HSD more recently with the new classifications. I have 4 GI disorders, happily managed, fibromyalgia and POTS and some histamine sensitivities & have worked with EDS/HDS patients for 15 years.
- Demmler JC, Atkinson MD, Reinhold EJ, et al Diagnosed prevalence of Ehlers-Danlos syndrome and hypermobility spectrum disorder in Wales, UK: a national electronic cohort study and case–control comparison BMJ Open 2019;9:e031365. doi:10.1136/bmjopen-2019-031365.
- Lam CY, Palsson OS, Whitehead WE, Sperber AD, Tornblom H, Simren M, Aziz I. Rome IV Functional Gastrointestinal Disorders and Health Impairment in Subjects With Hypermobility Spectrum Disorders or Hypermobile Ehlers-Danlos Syndrome. Clin Gastroenterol Hepatol. 2021 Feb;19(2):277-287.e3.
- Tu Y, Abell TL, Raj SR, Mar PL. Mechanisms and management of gastrointestinal symptoms in postural orthostatic tachycardia syndrome. Neurogastroenterol Motil. 2020 Dec;32(12):e14031.