What is this many of you are probably asking and why should you support a cause that is rare and not well known? Why support a cause when many of those diagnosed with it spend most of their lives trying to deny the symptoms, pain and at times the crippling effects.
So, why Ehlers Danlos Syndrome? For one it comes under the rare diseases umbrella and these are often overlooked. Secondly these conditions are doing some incredible work in terms of research and treatments which benefits so many other conditions including HIV and Cancer. The work in particular is around the study of genetic disorders and as a consequence this has resulted in a major breakthrough, Crisper Technique successfully used for gene therapy. Another area of major research has been into the effects of Fascia which looks into the movement and stabilizing of the internal organs which no one paid little attention to 5 years ago.
Now for the bit on the London Marathon. I am part of this small EDS family. I have personally tried and been accepted twice for the London Marathon and both times had to pull out as a consequence of injuries. I believe in trying and trying again, so for this third time one of the Merit team is entering her friend to run on our behalf. What is totally special is that in 2016 for the first time EDS has been allocated spaces as a charity and Merit has been honored with meriting one of them.
To all those who have already helped us raise the funds, thank-you and to those still to do so, thank-you!
a link in readiness.