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Aimee de Gruchy-Lambert

EDS UK Dazzle Walk 2023

Fundraising for Ehlers-Danlos Support UK
£550
raised of £200 target
by 25 supporters
Donations cannot currently be made to this page
Event: Blenheim 7k Fun Run, on 21 May 2023
Don your razzliest, dazzliest zebra attire this May and join the EDS UK Dazzle Walk 2023.

Story

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. 


About the campaign

Don your razzliest, dazzliest zebra attire this May and join the EDS UK Dazzle Walk 2023.

About the charity

Ehlers-Danlos Support UK

Verified by JustGiving

RCN 1157027
Ehlers-Danlos Support UK improves quality of life for people living with the Ehlers-Danlos syndromes (EDS). We work across the UK to support, advise and inform those living with the condition and the medical professionals working with them.

Donation summary

Total raised
£550.00
+ £117.50 Gift Aid
Online donations
£550.00
Offline donations
£0.00

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