Managing the daily symptoms of Ehlers-Danlos syndromes

Are you unusually flexible or have fragile skin? Understanding Ehlers-Danlos Syndromes is vital for a correct diagnosis and managing complex symptoms. Don't let your unique challenges go misunderstood.

What are the main causes of Ehlers-Danlos Syndromes?

• What is EDS? It is a group of inherited disorders caused by genetic mutations affecting the structure or production of collagen and other connective tissues.
• This faulty collagen leads to the weakness and fragility of skin, bones, blood vessels, and other organs throughout the body.
• Most EDS types are passed down from a parent who has the condition, though in rare cases, a spontaneous new gene mutation can occur.

Key symptoms of Ehlers-Danlos Syndromes to watch for

• The most common of all Ehlers Danlos Syndrome symptoms is joint hypermobility, where joints move beyond the normal range, leading to frequent dislocations.
• Skin that is soft, velvety, very stretchy (hyperextensible), and fragile, which bruises easily and heals poorly, is a classic sign.
• Many individuals also experience chronic pain, fatigue, and co-occurring conditions like Postural Orthostatic Tachycardia Syndrome, also known as POTS.

How can you prevent complications from Ehlers-Danlos Syndromes effectively?

• A formal EDS diagnosis, which may include using the Beighton score for hypermobile EDS (hEDS), is the first step toward a management plan.
• A key EDS treatment is physical therapy focused on strengthening muscles around joints to improve stability and reduce the risk of injury.
• Avoiding high-impact sports and activities that put stress on joints can help prevent dislocations, chronic pain, and other long-term complications.

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Living with EDS requires a multidisciplinary approach. If you suspect you have EDS, consult a geneticist or rheumatologist for a comprehensive evaluation and personalized care plan.

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