Thursday, December 11, 2008

Ehlers Danlos Syndrome:Its no freak show

Blogger Veronica is undergoing some investigations to see whether the health problems which have affected her life for many years could all be due to Ehlers Danlos Syndrome or Hypermobility Syndrome. Some time ago I suggested to Kim that it might be an idea to check and see if her daughter Veronica was hypermobile. It is distressingly typical for people with EDS not to be diagnosed until adulthood, and what is worse, often after many years of disbelief by medical professionals, family or friends. Now, after many years of health problems it's looking like Veronica may well have issues relating to her hypermobility.

I have long believed that the reasons diagnosis of Ehlers Danlos Syndrome or Hypermobility Syndrome are so rarely made in timely fashion are inextricably linked to the teaching doctors receive on these conditions whilst at medical school. Students have traditionally been taught that EDS is incredibly rare and they would be unlikely to see someone with it in their entire careers. Couple with that the kind of extreme images shown here which are typical examples of those shown to students and the philosophy of "If you hear hoofbeats think horses not zebras" and the problem becomes quite clear.

Reality is somewhat different though. EDS is now widely accepted to be more prevalent than previously thought, 1 in 5000 people are the current figures although that does not include the milder Hypermobility Syndrome which is thought to be far more common. Personal experience has taught me both that I am a magnet for other bendy people and that so many bendy people randomly knowing each other probably indicates HMS is a very common condition with very poor diagnosis rates and even EDS is not the rare condition doctors are taught to believe it is.

One feature commonly missed by doctors is that of the blue tinge EDS patients can exhibit, commonly seen in sclera, skin or teeth. From images I've seen of the blue colouring found in conditions such as Osteogenesis Imperfecta, the blue found in EDS tends to be less startling and more likely to be widespread throughout the body. This image is of the kind of blue 'glow' I display in certain lights. It's both more subtle than the above images might lead medical professionals to expect and importantly, far more representative of the overall appearance of the
vast majority of people with EDS.


Trixie said... that you in the last pic? The blue glow suits you! ;)

frogpondsrock said...

I am full of nervous energy today and I cant settle. I know that the appointment with our GP today will only result in a referral to a specialist, or at least to having some further testing done if Veronica bullies her GP into doing what she wants... *sigh*.

Veronica's joint pain had always been secondary to her other issues, so that even after you mentioned the possibilty of hypermobility, Vonnie and I didn't really pay that much attention to the idea... *sighs again*

Take care Bendy girl and you look very nice in blue... hehe

cheers Kim

Casdok said...

Good luck Kim.

Interesting. As you know autism was hardly heard of and now because of better diagnosis - we apprently have an epidemic!

Mysterious G said...

The blue glow thing, possibly difficult at nail down, as it will depend on the light source, and the equipment used to take the picture. You can get get a blue tinge from LED style light sources and some kinds of florescent strip lights due to they way they produce the light.

If you play with your computer monitor menu settings, most these days tend to have a colour temperature setting, fiddle with that and you may find that you can make white go slightly blue.. I believe it may be a similar effect.

If you like I can offer my services to study you more closely for blueness ;) :)

Dave said...

BG= BendyGirl
BG= BlueGirl
BG= BeautifulGirl

Veronica said...

Funnily enough, this was exactly the kind of thing my doctor mentioned yesterday, about how all the cases he had read about were the REALLY obvious ones. I pointed out that well yes, if they weren't so bad, people wouldn't want to photograph them for medical books. Heh.

I did get a referral for the genetic clinic that has recently opened at the hospital. My doctors thoughts? Possibility, but he doesn't know anything about it so go see someone who does.

Marla said...

The blue glow is very interesting.

LceeL said...

I hadn't been told of the 'blue glow' thing before, but Annie's skin coloring is a bit weird anyway - being Mexican and Irish as she is. A question though - and it may be related - do you have difficulty tanning when in the sun?

BenefitScroungingScum said...

Lou: My skin colouring is weird too, for the same reasons, mixed heritage. I do tan and quite well because of that. I'm fairly pale skinned, but I only look blue when the light hits me in the right way.

Thank you Dave!

gemmak said... look fab, blue 'glow' and all :o)