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.