May is EDS Awareness Month post 4

I will be answering @taylers.danlos.syndrome‘s 31 EDS Awareness Month Challenge questions, inter-cut with photos and EDS titbits. Go back to post 1 to see the 31 questions in full.

***Disclaimer*** Nothing on these posts should be taken as medical advice, I am speaking from personal experience.

Photo taken by @OscarVinter

[#imagedescription a photo of Charlie, a young white, cis woman with a brown bob hair cut, is wearing a red evening dress, to the knees, black tights and silver pointing high-heeled shoes, whilst perching on a light blue rollator. She is outside on a residential driveway in front of some trees. And is posing in a stiff pose with her arms bent at the elbows. Across the bottom of the photo is a semi-transparent white banner with writing in black font, 'How Hypermobile Are you?']

4. How hypermobile are you? According to the Beighton Scale which is often used to assess hypermobility, not very. However this threw my doctors off the EDS scent and had them looking at MS and Lupus instead. I have been told that the Beighton scale can be very misleading as it only assesses specific joints and if your joints are hypermobile often at the point you are being assessed, often as a young adult your muscles have been overcompensating for the hypermobility and are very tight giving the appearance of limited mobility.

According to the 5 Neurosurgeons, experienced in hypermobility who performed surgery inside my neck less than a month ago I am EXTREMELY hypermobile. And based on my experience of dislocating most of the joints in my body on a weekly basis, it would seem that despite my low Beighton score I am very hypermobile. Although many people with EDS do score very high on the Beighton scale and their hypermobility appears as extreme flexbility it is a common misconception that hypermobility correlates with flexbility.

‘A low score should be considered with caution when assessing someone, as hypermobility can be present at a number of sites that are not counted in the Beighton Score. For example, at the jaw joint (the ‘TMJ'), neck (cervical spine), shoulders, mid (thoracic) spine, hips, ankles and feet.’ Claire Smith, Understanding Hypermobile Ehlers-Danlos Syndrome and Hypermobile Spectrum Disorder, p122

I am extremely hypermobile in most the areas mentioned above that aren’t in the Beighton scale, so in many ways the rigidity in which some doctors still follow this diagnostic criteria was a barrier to diagnosis for me.

EDS titbit or tidbit as the Americans say: I have been asked before if EDS is a new disease or newly named disease, which is an understandable question considering how little people and medical professions often know about it and how lacking the treatment can be. However, this is not the case: ‘It is one of the oldest known causes of bruising and bleeding and was first described by Hipprocrates in 400 BC. Edvard Ehlers, in 1901, recognized the condition as a distinct entity. In 1908, Henri-Alexandre Danlos suggested that skin extensibility and fragility were the cardinal features of the syndrome.’ - Ehlers-Danlos syndrome--a historical review Authors, Parapia LA1, Jackson C. Citation: Br J Haematol. 2008 Apr;141(1):32-5. doi: 10.1111/j.1365-2141.2008.06994.x.


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