EDS UK would like to know about your experiences with Ehlers-Danlos syndrome; how it affects you and your daily life, your journey towards diagnosis and any positive achievements you would like to share.
Please share your experiences and help us raise awareness of why this condition needs funding for research, and greater awareness within the medical profession. EDS UK reserves the right to promote individual's stories through our social networks and other channels.
You can read the stories that people have submitted so far here. You can write your story below up to a maximum of 2000 words, add a photograph and a YouTube video link. There are a number of rules for submission so please read this guide carefully.
1. Avoid posting anything unrelated to EDS
2. Never give medical advice, if advice is needed seek it through the proper channels.
3. Do not post criticisms of staff or trustees, these should be addressed through the chair of Trustees via the office.
4. Discussions about medical professionals, medical advisors or medical institutions should be avoided and you should not mention them by name.
5. Consider the language you use as this is an open website and young people may wish to read your posts
6. You shuold not include your personal contact information, email addresses, phone and email, conduct this through private messaging.
7. Do not post any advertising or endorsements to other organsations.