Ehlers-Danlos syndrome (EDS) is a rare condition that affects connective tissue, which is important for maintaining skin elasticity and the shape of organs. Many patients experience hypermobility of joints (where joints extend more than they should, causing damage) and hyper flexibility of the skin (abnormally fragile and stretchy skin).
For parents of children with a rare disease like Ehlers-Danlos syndrome (EDS), managing the disease and going to school can be challenging. Here are a few tips to help: File a treatment plan with the school A treatment plan contains information about your child’s disease, what the treatments…
Effectively managing a rare disease like Ehlers-Danlos syndrome (EDS) can be challenging. Here are five tips to get the most out of your doctor’s appointments: What’s new since the last appointment? Do you have any new symptoms? Have any medications that you take changed (even over-the-counter ones)? What have…
Ehlers-Danlos syndrome (EDS) is the name given to a group of genetic disorders that weaken the connective tissues supporting muscles, blood vessels, and other tissues. Often, the first time patients hear about EDS is when they are diagnosed, which makes some wonder why they have been diagnosed with a…
Ehlers-Danlos syndrome (EDS) is a rare heritable disease, which affects the connective tissue. Patients generally have soft, velvety skin that is fragile and does not heal quickly. In many types of EDS, scar tissue is slow to form and is easily damaged, with scars to stretch and expand over…
A diagnosis of Ehlers-Danlos syndrome (EDS) often leaves patients and their families with many questions. It can be hard to find information about rare diseases and connect with other patients. Here are some frequently asked questions about EDS. What is EDS? EDS is a group of disorders that weaken the…
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