This is a charity appeal. I would like to ask as many colleagues and blog readers as possible to sponsor me in my attempt to complete an epic bike ride via the website www.justgiving.com/simon-hughes27
I am the UK Sales Manager for MANN+HUMMEL VOKES AIR Ltd which falls within our Industrial Filtration – Industrial Air division and on August 21/22 I will be cycling 480km from Newcastle to London in 24 hours to raise money for Ehlers-Danlos Support UK. I have some experience of endurance events having ridden one of the stages of the Tour du France (known as the Etape du Tour which is open to all comers) in 2013 and run many marathons and ultra-marathons, including a 160km race so I have some idea of the physical challenge ahead.
But that physical challenge will not be anything compared the one that sufferers from EDS face on a daily basis: Ehlers-Danlos Syndrome (EDS) can lead to complete physical disability and some rarer types can be life limiting but for the majority of sufferers it manifests itself in many ways from “stretchy skin” to constant and chronic joint pain, auto-dislocation, fainting fits, digestive problems, chronic fatigue, insomnia and combinations of these symptoms.
My daughter Kelly is a 21 year old second year University student and she was diagnosed with EDS in 2011 after many years of missed diagnosis.
She is affected my constant joint pain, digestive problems and chronic fatigue but despite these setbacks, she is incredibly cheerful and is on course to obtain a high level degree. She has had to give up her beloved ballet, stop playing tennis and the piano is now a rare pleasure rather than a daily joy. She is also alcohol intolerant so traditional University life has been curtailed to a great extent (maybe a plus side from a fathers perspective).
That she has received fantastic support from the charity is not in doubt but the charity needs more funds to conduct research into the causes and treatment of the syndrome and for these reasons, I will be putting myself to a stern test come August; but not as stern a test as many, many people face on a daily basis.
Your support will be greatly appreciated!