I have a rare genetic disorder called Ehlers-Danlos Syndrome, which is a disorder affecting the collagen in my body. Collagen is the body's connective tissue between bones, joints, organs and other tissues which keeps everything in place- think of it like the mortar holding the bricks together in a house. People with EDS have faulty collagen, which leads to a whole range of symptoms which often present differently for each patient.

 

Mine mainly affects my heart, joints and mobility. I also have very fragile, translucent skin which breaks and bruises easily and takes a long time to heal. EDS is incurable, but with the help of charities such as Ehlers-Danlos Support UK, we are finding more and more ways to learn to live with it.

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"The Ehlers-Danlos Support UK (EDS UK) was set up in 1987 to support, advise and inform those living with the Ehlers-Danlos syndromes.  Over 30 years later, we are the largest UK charity that exclusively represents and supports people with all types of EDS. We work to minimise the impact of EDS by making its diagnosis, treatment and management accessible to everyone when they need it. We provide support through local physical and virtual support groups led by trained volunteers and via our freephone helpline. We maintain a website, issue regular newsletters, and publish materials to inform the EDS community, those with a specialist interest in the condition, and the wider public. We engage with members of local and national public policy communities to enhance their knowledge of EDS and stimulate actions beneficial to the EDS community. Guided by our specialist Medical Advisory Panel, we work to fund appropriate, targeted and timely research projects. We are a charity and rely on fundraising and donations to continue our work. Your support is greatly appreciated and is essential to ensure we can continue to make our invisible, visible."