EDS or Ehlers Danlos Syndrome’s mantra is one of making the Invisible Visible.
Why would EDS choose this mantra given it is a syndrome coming under Rare Diseases, surely all can tell that there is something different? The thing is that on the outside you can’t see a thing, yet, turn those with EDS inside out and you get a network of different, rare and challenging genetic disorders caused through faulty collagen which affect skin, joints, blood vessel walls and pretty much all of the body structure : and what makes it most rare is the correct diagnosis and treatments. The symptoms are many, from constant pain, internal bleeds, organ ruptures, and inflammation of rib cages, unstable heart rates, head and neck instability, poor response to anaesthetics, dislocations and so on: actually 31 sub-headings in total. The challenge is to educate and inform with regards to the syndrome, help those living with EDS and their families get the right treatment, diagnosis and help.
The challenges of EDS resonate with us as a team and a business for many reasons. Notwithstanding that some of us have been directly affected so we bring a deep understanding of the confusion & at times embarrassment at looking the same yet finding some things so hard, we love that EDS is passionate about education and information, we love that it is about de-centralisation and community and most of all we love that it seeks to make the invisible, visible.
To find out more about what EDS is please check out our charity page by clicking here.