Ehlers-Danlos Syndrome (EDS) is a genetic connective tissue disorder with many misconceptions. There are 13 defined types of EDS, each associated with varying genetic changes in a person’s DNA that affect specific areas of connective tissue in the body. Each type of EDS has its own list of symptoms, but a few common ones include joint hypermobility, stretchy skin, and fragile tissues. Due to the varying types of EDS, the prevalence can range from 1 in 3,100 to 1 in a million for rarer types.
EDS is usually diagnosed through an assessment of family history, clinical evaluation, genetic testing (excluding hypermobile EDS), and the presence of specific symptoms to categorize the type of EDS. Patients are also commonly evaluated for other diseases and disorders that have been shown to have a close correlation with EDS, such as POTS, anxiety disorders, and Chiari malformation. While there is currently no cure for this disorder, several treatments can help alleviate symptoms. These include physical therapy to strengthen connective tissues, medication for chronic pain, and surgical joint replacements in severe cases.
The most important thing to remember when learning about EDS, or when trying to understand a person with EDS, is that it exists on a wide spectrum. This spectrum not only reflects the many types of EDS but also the variability within each type. People with the same type of EDS may have very different levels of symptom severity. For example, the most common form of EDS, hypermobile EDS (hEDS), presents a range of symptoms that can vary dramatically from person to person, including joint instability, mast cell activation syndrome, pain, fatigue, GI issues, dysautonomia, headaches, and anxiety.
Remember, even though EDS can come with some impressive party tricks, it's not always fun. Think of it as a body that can do the limbo at a party but also feels like it has been through an obstacle course afterward. Remember to be appreciative and mindful of our able bodies while also acknowledging those who face the challenges of EDS every day.
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