Important Information

Feb 2017

Many changes are taking place that are going to lead to changes in the terminology associated with hypermobility related diseases. The future posts in this blog will reflect that, and where I can, I will edit/delete past posts to reflect that updates for the reader. However, I am waiting to fully understand these changes, and the updated diagnostic criteria on EDS that will be published in March 2017. I am also inclined to keep those pages (with an update line on top)  as a reminder of how confusing the things were - that is hoping things will be less confusing in the future.

You can find some information here: http://ehlers-danlos.com/wp-content/uploads/QandA-2.pdf


Those looking for more information on hypermobility type EDS and hypermobility spectrum disorders, will still find many useful links on this blog. I also highly recommend my favorite blogger Jan Groh's site: http://ohtwist.com (check out all the "about" pages) for comprehensive info and links.  


As far as JHS, BJHS, HMS and other such terms, they are all being brought under the umbrella diagnosis of Hypermobility spectrum disorders (HSD) where the new strict criteria for hEDS is not fulfilled but there is joint hypermobility (generalized, or localized or peripheral) leading to pain symptoms and other systemic symptoms. Overall, I am optimistic that in India, this will bring about a new era where people with multiple seemingly unrelated systemic problems with coexisting joint hypermobility will be re-evaluated for HSD instead of getting dismissed as overthinking hypochondriacs, or worse, as malingerers. Often the person with HSD is being treated for musculoskeletal symptoms with miscellaneous semicorrect or inadequate diagnoses by an orthoped (who has no idea about all the other problems she/he faces) while all other systemic problems are being treated by various specialists who also have no clue about the possibility of a connective tissue disease in her/him. This is ineffectual for long term management as well as frustrating for both the patient and doctors. HSD is not rare, and HSD being a spectrum, an extremely variegated presentation profile of patients is seen. Recognition of HSD as a newly defined disease will lead to the diagnosis and holistic treatment of millions of people. That is what I hope.