Hypermobility and EDS

For those suffering with Ehlers Danlos Syndrome (EDS), there's a new and revised international classification criteria for it here ehlers-danlos.com/2017-eds-...

Each heading has an article link.

For those suffering with MCAS as well, there is an article written by Dr Afrin (Never bet against Occam) and Prof Seneviratne.

The articles are for the medical profession, so they are a it heavy on detail and jargon but worth exploring nevertheless.

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  • Earlier this week I found this helpful link on the same USA website ...it's to a Q&A for patients on these revisions, so relatively "accessible"

    ehlers-danlos.com/wp-conten...

    As I understand it, these changes are being driven by USA professionals....our UK professionals will be "taking a view"...e.g. This week I had an email from the HMSA telling me not to worry, my diagnosis will stand regardless...we'll see πŸ€·β€β™€οΈ...here is a link to a current HMSA statement on this:

    hypermobility.org/hmsabrolly/

    πŸ€πŸ˜˜πŸ€πŸ˜˜πŸ€ coco

  • Our UK professionals were very much involved in this and it was stressed that this is international criteria. I know Professor Grahame and Dr Hakim (UK's top Hypermobility rheumatologists) were involved and have authored some of the papers that were published. Dr Hakim has been using the new criteria for at least 2 months, maybe more. (I saw him in mid January and he said he diagnosed me with hEDS based on the new criteria, although I'm not convinced and think I'm closer to the HSD diagnosis.) Professor Aziz was involved in research too in terms of GI dysfunction and EDS. Here are all the papers; onlinelibrary.wiley.com/doi... - a bit of light reading!

    People with a current diagnosis won't see any difference unless they see visit their specialist again and the doctor re-assesses and/or the individual wants to be part of the research project.

    I know the change in criteria has caused a lot of furore in the online community but I believe this is a good thing. For people with EDS (all except the hypermobile type), they will receive a proper and confirmed diagnosis via genetics. For those with hEDS, they want to identify the gene and therefore, rule out people who don't fall under this umbrella. For those with HSD, hopefully they will finally have some recognition and treatment. The new criteria made reference to the co-morbidities (even in people with HSD) which is a massive deal. For so long I've been told I have so many things wrong with me but now these new criteria formally link it together to one condition. They even label it as "systemic manifestations". The Ehlers-Danlos Society has all the information and it's very accessible and understandable.

    Hopefully we will see some progress for those of us who have EDS and HSD.

  • Well Said πŸŒŸπŸŒŸπŸŒŸπŸŒŸπŸŒŸπŸ‘πŸ‘πŸ‘πŸ‘πŸ‘πŸ€πŸ˜˜πŸ€πŸ˜˜πŸ€πŸ˜˜

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