What is EDS?
Ehlers-Danlos Syndrome is a group of inherited disorders that mostly affect the skin, joints, and blood vessels. The most common types of EDS includes the Classical Type, Hypermobility Type and the Vascular Type, also known as VEDS or Type IV. The Vascular Type Ehlers-Danlos Syndrome is the most severe type of EDS, it makes the blood vessels and organs fragile, leading to easy bruising and rupture. Symptoms of VEDS includes stretchy skin, thin skin, thin lips, small chin, thin nose, large eyes and joint dislocation.There is no cure yet for EDS, but there are treatments that have been known to be very helpful.
Here is a list of sources that provides useful information about VEDS and other types of Ehlers-Danlos syndrome.
Please note that this isn’t an official endorsement and we’re not necessarily affiliated with these organizations. Is there an organization or resource caregivers should know about that isn’t on the list? Let us know.
This is a non for profit organization established by EDS patients and family members to help improve the quality of life for people who have EDS and raise awareness through research, support, education and advocacy. Visit this site for information on types/causes/ syndrome of EDS, raising funds for a cure and raising awareness. The site also has a gift store which provides EDS awareness bracelets, EDS wallet medical cards, designer memorial pins, care buttons and information packets for educators.
This is the place to go for visual supported information about EDS. The site provides information, awareness, guidance and support for EDS patients, families, general public and medical community. In addition to advocacy, assistant with medical crisis, navigating the medical system, networking and fund raising for EDS research projects. There is also a helpline for an emergency crisis advocate on the website.
For quick answers to your Frequently Asked Questions about EDS, this is the site to visit. EDNF provides answers to questions such as how one gets EDS, the meaning of “mosaic” or “mosaicism”, whether or not to get genetic counselling, how EDS affects one’s lifestyle, sleep problems and so on. The site also has an helpline and provides information about Ritter Rules. Named after actor John Ritter, who died of a thoracic aortic dissection, Ritter Rules are life-saving reminders to recognize, treat and prevents a deadly tear in the large artery that carries blood away from the heart.
Visit this website for general information on all types of EDS. On this site one can tell and read stories of individuals with EDS, find latest news and past and current research on EDS.
This sites provides up to date quick and easy to read information about EDS, such as the definition, causes, risk factors, symptoms, diagnosis and treatments of EDS.