Rare diseases are hard to say, but even harder to live with - Chloe Print-Lambert
image by: The Ehlers-Danlos Society
Living with EDS isn't plain sailing and there will be blood, sweat and tears! There will be days you feel angry, resent others, grieve for the life you may have once had and for lost opportunities. There will be times you can't possibly see how to carry on. This is totally okay, feeling upset is not a sign of weakness and it's so important to be honest and open about your feelings. I have found it really helpful to be completely honest and open with people about my condition. With secrecy it is so often associated with shame and embarrassment whereas when you are open and honest, people see things as they are very matter of fact and it is much easier that way.
You know your body…
Living with EDS isn't plain sailing and there will be blood, sweat and tears! There will be days you feel angry, resent others, grieve for the life you may have once had and for lost opportunities.
Ehlers-Danlos News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment.
The mission of EDS Awareness is to ensure greater understanding of Ehlers-Danlos Syndrome by patients, the general public and within the medical community – in order to improve the quality of life for those affected by EDS – and those who care for them.
Our organization is maintaining our outreach to help those in a medical crisis obtain relevant medical information and to put them in contact with EDS specialist, in hopes to potentially save their lives.
The Ehlers-Danlos Society is a global community of individuals, caregivers, healthcare professionals, and supporters, dedicated to saving and improving the lives of those affected by the Ehlers-Danlos syndromes (EDS), hypermobility spectrum disorders (HSD), and related conditions.
Just a 20-something living my life day to day, despite the pain.
People with the classical form of Ehlers-Danlos syndrome experience wounds that split open with little bleeding and leave scars that widen over time to create characteristic "cigarette paper" scars.
There are many types of EDS based on different gene mutations affecting the structure or assembly of different collagens. Many syndromes overlap and it may be difficult to differentiate one from the other. All share common features of fragile skin and laxity of joints and ligaments, to a greater or lesser degree.
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