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 often possible to learn to effectively manage your condition yourself, with the right advice and guidance.
EDS cannot be ‘cured’ but many people learn over time how to control it and live full and active lives. The day-to-day management of most types of EDS is based around the right kind of exercise, physiotherapy and pacing. In addition you should seek referrals for any associated conditions you may have. If there is an overwhelming number of them to deal with, we suggest picking the most debilitating. 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 but often, getting help to improve the most challenging one or two can make a big difference to your quality of life.