The Ehlers-Danlos syndromes (EDS) are a group of thirteen individual genetic conditions, all of which affect the body’s connective tissue. 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. These are complex syndromes affecting many systems of the body at once, despite this EDS is often an invisible disability.
Support is in the very fabric of what we do, so much so we even put it in our name.
We run the only helpline in the UK specifically to help anybody touched by EDS and at a local level, our network of volunteers run local support groups and regional facebook pages to help families, friends and patients.
More regularly we are hearing stories from members about the difficulty they are having claiming the benefits they are entitled to, so in 2016 we became a professional member of Benefits and Work, giving our members free access to specialist guides to claiming Disability Living Allowance, Personal Independence Payment and Employment Support Allowance.