On May 21st, I am going to attempt the walk the Blenheim 7km Fun Run, which will be the longest I've attempted to walk in one go for several years!! May is EDS (Elhers-Danlos Syndrome) Awareness Month and to help raise awareness, EDS UK encourages people to take part in a 'Dazzle Walk' - 'choose a distance, walk it, wheel it, use whatever aids you need to get involved however you can'!

As some of you may know, I suffer from a variety of autoimmune and chronic disorders, one of which is Ehlers-Danlos syndrome or 'EDS'. This isn't actually an autoimmune issue, but an inherited connective tissue disorder, where collagen production is affected, causing issues ranging from hyper-mobility, slow wound healing, easy bruising, dysautonomia and small fibre neuropathy, amongst other issues. It can greatly affect every aspect of one's life, and for many (including myself) it can cause pain, fatigue, brain fog and mobility issues. 

There is very little awareness or understanding for this condition (or family of conditions - 13 types are now recognised!), even amongst doctors! This means many folks go undiagnosed for many years - I myself had never heard of it when I got diagnosed 5 years ago - and therefore may people go without the information and support they need, with often life changing consequences. More awareness and research is needed, as well as more funding to support those with EDS, whether that's better treatment or management options, or better peer support and advocacy.

ZEBRAS!

Often those with EDS will refer to themselves as 'Zebras' and Zebra patterns are often used to represent support for those with EDS - 'Why?' you may ask?!

In medicine, the term 'zebra' is used to refer to a rare disease or condition. Doctors are taught to assume that the simplest explanation is usually correct to avoid patients being misdiagnosed with rare illnesses - 'expect a horse not a zebra'. However, many medical professionals seem to forget that 'zebras' DO exist and so getting a diagnosis and treatment can be more difficult for sufferers of rare conditions. Ehlers-Danlos syndrome is considered a rare condition so EDS sufferers are known as medical zebras. This identity has now been adopted across the world through social media to help bring the EDS community together.