Newly Diagnosed: Taking the First Step on Your Journey

Becoming educated is a good place to start on your journey with Ehlers-Danlos syndrome. Whether you are a patient or a caregiver, knowing as much as possible about the disease will help you be a more active participant in your or your loved one’s healthcare. Learn more below about Ehlers-Danlos syndrome, its causes, its symptoms, and how it’s diagnosed.


EDS is the name given to a group of disorders that affect connective tissue and cartilage, which provide structure to joints, tissues, organs, and skin.

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Under the current 2017 classification system, 13 types of EDS are identified. The complications specific to a given EDS type can range from mild to life-threatening.

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Mutations in at least 20 different genes have been associated with different types of EDS. The more common types of this disease are caused by mutations in genes that provide instructions for making components of collagen.

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Different types of EDS can cause different symptoms. Frequently reported symptoms involve problems with connective tissues in the joints and skin. Patients with EDS may also have skin that bruises easily and heals very slowly. Most forms are also marked by hypermobility in the joints.

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To confirm a diagnosis of EDS, physicians can conduct a physical examination, skin biopsies, imaging tests, and genetic testing. Family history of the patient also plays an important role in diagnosis.

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Living With EDS

EDS patients experience many different symptoms, and dealing with all of them can be a challenge. Living with EDS can be difficult, but many patients learn how to control and cope with the symptoms over time.

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