In recent decades, thousands of people have been through the journey of discovering their connection with Ehlers-Danlos syndromes. On average, it takes over 19 years for individuals to gain proper recognition of their condition, due to the huge range of symptoms and a lack of clinical awareness. This means an average 19 years of not living with an accurate diagnosis.
As a charity we are strongly focussed on individuals, with the goal of making a positive impression on those impacted by EDS. We provide support by actively advocating and educating the general public and medical community through national campaigns; financially supporting individual sufferers and their families through offering grants; and contributing to vital clinical research activities.
Visit our Virgin Money Giving page to read more about John’s Story and support him by making a donation today.
If you have a place in the London Marathon this year, why not give yourself a stronger purpose to run whilst making a real positive impression on the lives of those suffering with Ehlers-Danlos syndromes by choosing to fundraise for Mind Body EDS. We are welcoming all those with London Marathon 2019 ballot places to run for us, so please get in touch with us here.
During the Spring of 2018, we started a campaign to raise awareness through Instagram of the length of time it can take to reach a diagnosis of Ehlers-Danlos Syndromes. Click below to read the individual stories of some of our followers who shared their story via #myEDSdiagnosis