Real Life Stories
Many people have never heard of EDS and the name itself does not give much in the way of explanation. The Ehlers-Danlos Syndromes were named after the two physicians who first documented it in the early 20th century. However, to truly understand the meaning of the Ehlers-Danlos Syndromes, it is very important to understand the wide array of symptoms and the devastating impact on the affected individuals and their families.
EDS is a group of inherited connective tissue disorders. The collagen in the bodies of people with EDS is faulty. Collagen is the 'glue' that holds your body together and provides tensile strength to body parts like skin, joints, muscles, ligaments, blood vessels and internal organs. The faulty collagen does not provide enough strength to properly support body structures in a person with EDS. Depending on the specific type of genetic mutation, the collagen in certain body systems will be affected. Ehlers-Danlos Syndrome can range from mild to debilitating and can even be fatal.
There is no cure for EDS. Genetic disorders must be managed supportively. Current treatments involve close monitoring of cardiovascular and gastrointestinal systems, bracing, physiotherapy and great emphasise on pain management. Bodies of those with EDS are extremely fragile and can sustain injury from minor trauma. People with EDS must pay special attention to protect their bodies from injuries that could leave permanent damage.
There are currently thirteen types of EDS (please see link for classifications);
Due to the lack of understanding of this rare disease, many people with EDS go through years without discovering what is actually causing their medical problems and chronic pain. With awareness growing, it is now believed that EDS may be much more prevalent than previously thought. EDS Canada is working very hard to raise awareness.