Ehlers Danlos Syndrome

Have you heard of Ehlers Danlos Syndrome?

May is Ehlers Danlos Awareness Month. I suspect that a lot of people reading this post won’t have come across this health condition before, so I thought I’d write a post to play my part in raising awareness. It’s this lack of knowledge about the condition which means that diagnosis on average takes at least 19 years. From my first visit to the doctors as a young child complaining of pain until my diagnosis, it took about 35 years including many, many visits to health professionals. People suffering from Ehlers Danlos Syndrome are known as zebras (hence the picture), due to the phrase taught to medical students: “When you hear the sound of hooves, think horses, not zebras.” As Ehlers Danlos is a rare condition, it is the zebra in the room and often isn’t considered as an option for diagnosis.

Ehlers Danlos Syndrome (EDS) is a group of connective tissue disorders which is the result of defects in the collagen. This causes the connective tissue to be very stretchy and fragile which then causes damage to the body. I have the hypermobility version of the condition and my joints are very flexible. This results in a lot of joint instability and chronic pain. However, it also affects all parts of the body, including the digestive system and respiratory system. I have also developed a condition called POTS (Postural Orthostatic Tachycardia Syndrome) as a result of having Ehlers Danlos, which affects all of my autonomic nervous system.

On a lighter note, the condition has meant that I have super soft skin and in the past the flexibility has given me a good choice of party tricks. I also always use my flexible toes to pick things off the floor instead of bending down! But what I wouldn’t do to be free from this condition and for there to be a cure, particularly for those suffering from the severe version of this condition.