The Ehlers-Danlos syndromes (EDS) are a group of thirteen individual genetic conditions, all of which affect the body’s connective tissue. Connective tissue lies between other tissues and organs, keeping these separate whilst connecting them, holding everything in place and providing support, like the mortar between bricks. In EDS, a gene mutation causes a certain kind of connective tissue – the kind will depend on the type of EDS but usually a form of collagen – to be fragile and stretchy. This stretchiness can sometimes be seen in the skin of someone with EDS; individuals with the condition may also be able to extend their joints further than is usual – this is known as being hypermobile, bendy or double-jointed. As collagen is present throughout the body, people with EDS tend to experience a broad range of symptoms, most of them less visible than the skin and joint differences. These are complex syndromes affecting many systems of the body at once, despite this EDS is often an invisible disability. Symptoms commonly include, but are not limited to, long-term pain, chronic fatigue, dizziness, palpitations and digestive disorders. Such problems and their severity vary considerably from person to person, even in the same type of EDS and within the same family.
A dear friend of mine, and her two siblings suffer from EDS, and it was only after a brief conversation I decided to look up exactly what it was all about. I spent an entire evening with tears in my eyes reading through the Ehlers-Danlos Support UK website, horrified at what they, and fellow sufferers, have to go through on a day to day basis. I felt like I had to do something to raise awareness, as they spent years being told by doctors that it was all in their heads, and should just get on with it, before spending a large amount of money to finally get diagnosed privately. The only thing I'm even remotely good at is music. So I decided back in July to arrange a song, and get as many of my friends to record a charity song. All created for free, and a long road to get it all done, but such a pleasure to do something for this horrendously underfunded charity. I can't thank my friends and colleagues enough for their help and their valuable time.
Truly hope you enjoy the song, and also the little extra video explaining a little bit about EDS... and most of all... I sincerely hope you can donate, however little you can afford, to this very worthy cause. It'll make all our efforts on this project worthwhile :)
Many many thanks in advance,
Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving - they'll never sell them on or send unwanted emails. Once you donate, they'll send your money directly to the charity. So it's the most efficient way to donate - saving time and cutting costs for the charity.