There is a serious need for revision of everything known related to EDS-HT and for clinicians and researchers from everywhere to reach some sort of a consensus. Especially, the diagnostic criteria.
This post at https://mastcellblog.wordpress.com highlights the issue very well.
If you’re suspected of having Ehlers-Danlos Syndrome you’re likely to be tested via the Beighton Score. This looks at certain joints in the body and how hypermobile they are:
- Elbow bends backwards more than 10 degrees (1 point per elbow)
- Knee bends backwards more than 10 degrees (1 point per knee)
- Thumbs bend inwards to touch your forearm (1 point per thumb)
- Little finger bends up more than 90 degrees from the back of your hand (1 point each pinky)
- Hands can be placed flat on the floor with your knees straight (1 point)
I have big issues with the Beighton Score. My knees don’t bend backwards, my thumbs don’t bend anywhere near my forearms and I’ve never been able to place my hands flat on the floor with straight legs. So according to this I’d only score 4/9 and not really be classed as hypermobile at all!
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