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My name is Carolyn I'm 33 years old and I have vascular ehlers danlos syndrome I have been diagnosed 5 years but have had it all my life. My brother and dad also has vascular Eds. With only around 220 beds sufferers in the UK we are a small portion of people who need to raise awareness on this evil syndrome . Vascular Eds is life limiting and life threatening. Basically our bodies have faulty collagen the glue that keeps your body together so our artreys and organs are prone to ruptures.
The past few years I've made amazing friends throught the veds community they are my extended family. We have suffered alot of losses over the past few years and this 32 mile stand up paddle board challenge is in their memory. I will keep fighting for us even if it kills me which it could do.
My sup instructor yellowbelly sup school will also be doing the challenge with me to .
Together we can make a difference together we can raise awareness. Together we are stronger and we can begin to find a cure .
If you can spare any donation even if its pennies it will very much appreciated .
This is my biggest challenge to date and I'm so ready to smash it and fight on with vascular ehlers danlos syndrome . It may take my life in the end but I will go down having fun and fighting