Living with EDS
You may feel like you’ve made a breakthrough when you finally get a diagnosis, only to find that you are discharged and there is no-one to oversee your care as would be the case with other illnesses that affect multiple systems of the body. While there is no doubt that this lack of support is unfair, it is perfectly possible – indeed necessary – to learn to effectively manage your condition yourself.
EDS cannot be ‘cured’ but many people with EDS control it well and live full and active lives. It’s never too late to start managing your condition better and improve your quality of life. Now that you know what is wrong, you are in a better position to deal with it.
The day-to-day management of EDS is based around the right kind of exercise, physiotherapy and pacing. In addition you should seek referrals for any sister conditions you may have – if there is an overwhelming number of them to deal with then pick the most debilitating few – this could mean being referred on to services such as neurology, gastroenterology, podiatry or a pain management programme.
It can be a challenge to deal with so many symptoms, at the same time it presents lots of opportunities for improvement as there are many measures out there to be tried which could work for you and better your quality of life.