Ehlers-Danlos syndrome

If you have Ehlers-Danlos syndrome (EDS), there’s a good chance you’ve felt alone at some point during your health journey. EDS can be a hard one to explain to people, and it’s a little bit complicated. Basically, EDS is classified into 13 different types that affect connective tissue—including cartilage, bone, fat, and blood. All types of EDS are caused by faulty genes that produce weak or inadequate amounts of collagen, which is a critical protein in connective tissue. Each condition is defined by its signature features and where symptoms show up in the body. The most common type is hypermobile Ehlers-Danlos syndrome (hEDS), which is characterized by super-flexible, unstable joints, and soft, stretchy skin that’s easily bruised. Other symptoms include fatigue, pain, torn ligaments and tendons, and dislocated joints. EDS is diagnosed based on family history, physical exam, imaging, genetic testing, and sometimes biopsy. Managing your EDS will depend on your type and symptoms, but at the very least, you’ll want to protect your joints from damage. Physical therapy to strengthen supportive muscles can help, as can using braces to support joints. It’s also important to protect your skin from bruising and tearing. Take extra vitamin C to help prevent bruising and use sunscreen and mild soaps. Some types of EDS, like vascular Ehlers-Danlos syndrome (vEDS), can be life threatening—if, for example, it leads to blood vessel tears. If you are diagnosed with EDS, your practitioner should walk you through all the specifics of your type, but make sure to ask questions if you need more clarity. It’s likely that you didn’t even think about your connective tissue before now, and it’s totally normal to feel a little lost when you get a diagnosis like this. But never fear: your WanaFam understands you, and we’re all getting smarter about our conditions alongside each other.