Tuesday, 23 February 2016

High or low Beighton score - what does this mean for someone with a hypermobility syndrome?

It's Hypermobility Syndromes Awareness Week - a national campaign run by The Hypermobility Syndromes Association.
One of today's facts was this:

This is really important.
This misunderstanding delayed my diagnosis (and therefor delaying appropriate treatment/management advice) until I was a 24 year old wheelchair user - despite symptoms being obvious since I was a young child.
You see, my score is max 1/9 - I can bend over with my legs straight and touch the floor. Sometimes. But I cannot do any of the other 8 moves that the Beighton score uses.
And yet, most major joints slip out of line causing severe pain, instability, and making some tasks impossible. I also have POTs due to floppy veins, and some gastro-related issues -all of which point to my having a heritable disorder of connective tissue (probably EDS hypermobility type, possibly JHS - but as treatment/management is the same, I don't mind which label people use).
At the same time I know people who would score 9/9 and yet have no health problems.
So any fellow bendies who have a low score, please don't feel you have no right to be affected badly, or are 'making a fuss about nothing' when you need help for symptoms. And you who score highly, do not fear that you must be worse because of your score. The score has no bearing on severity of symptoms.
Any medical person reading this: PLEASE don't dismiss hypermobility syndromes as a possibility just because of a low score. Instead consider whether any joints are unstable or hypermobile - such as shoulders, hips and feet (which the Beighton score doesn't assess), and also where the instability does not manifest in a way that the Beighton score recognises (such as my knees don't bend backwards -they bend sideways and rotate on the shin bone - trust me: this hurts and is highly inconvenient when trying to walk!), and consider hypermobility based on the person in front of you, and not on a very blinkered, and outdated concept.

For more information on diagnosing hypermobility syndrome see the HMSA's website hypermobility.org
To become a member (including professional membership), see here: hypermobilityshop.org
For stickman resources related to hypermobility syndromes, see: stickmancommunications.co.uk/Ehlers_Danlos_and_HMS

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