May is EDS (Ehlers-Danlos Syndrome) awareness month

Having EDS means your collagen is faulty. As collagen is found throughout the body, the condition is multi-systemic and lifelong. It is genetic, there is no cure and it’s difficult to diagnose.

My experience of EDS is having chronic pain of various types. This is partly due to overstretched ligaments, and joints (think of an old frayed hair elastic).

The condition has given me gut issues and food intolerances.

Dysautonomia is a dysfunction of the nervous system that regulates non-voluntary body functions. For me, this means I regularly feel dizzy, have palpitations, and have problems regulating temperature.

Mast cell activation has caused almost constant itching and sometimes rashes. I was recently stung by a wasp that set off a chain reaction of issues.

Hypersensitivity to light, sound and smells means I have to manage social situations. I frequently have to walk out of shops.

I’m not aware of anyone with EDS who has a good night’s sleep. Consequently, fatigue is something that has to be managed on a daily basis.

An extreme irony is that the person with EDS always looks so well, (probably due to stretchy, velvety skin).

My hope is that the condition can be much better recognised, diagnosed and managed, in the near future.

– Wendy