My name is Charlotte and I have Ehlers Danlos Syndrome, or EDS.
I have decided to cycle 200 miles from Lands end to Exmouth, starting May 25th and finishing on the 27th with my Dad Rob and Uncle Sam along side me on a specially adapted recumbent trike, to raise more awareness and help to fund critical research into treatment for those with EDS.
EDS is a group of connective tissue disorders, and to keep it simple the best way to describe it is the glue that holds our skin, our joints, organs, our entire bodies together, doesn’t work properly.
There are several different types of Ehlers Danlos, some are life changing, some life limiting and some are life threatening
One of the worlds leading experts in EDS once said ‘No other condition in the history of modern medicine has been neglected in such a way as Ehlers Danlos syndrome’
There is a huge lack of awareness when it comes to EDS. Parents who’s children await diagnosis are accused of child abuse, or patients are misdiagnosed, mistreated or dismissed entirely
EDS is complex and rare, it often comes with many other associated conditions, many of which I have. I am by no means the worst off, some patients with EDS are wheelchair bound, fed through feeding tubes or live their lives from a hospital bed.
Early diagnosis is critical to prevent further, life limiting and more complications.
Any donation big or small is greatly appreciated!
Lets do this