Raising Awareness of Ehlers-Danlos Syndrome

Ehlers-Danlos syndrome (EDS) is a group of connective tissue disorders found in about 1 in 5,000 people worldwide across its 13 known forms, and an estimated 1 in every 20,000 to 40,000 among those with classical EDS. Raising awareness of this rare genetic disease could help more people attain an earlier diagnosis and start of treatment.

Here are some facts about EDS, with a spotlight on efforts to make it more widely known.

What is EDS?

EDS is characterized by a collagen deficiency that affects the strength of ligaments, tendons, muscles, skin, and blood vessels.

Mutations in at least 19 different genes have been associated with different types of EDS. Mutations in genes that encode portions of collagen, a protein that gives cartilage and connective tissue structure, cause the more common types of this disease.

EDS affects many systems at once, and patients can experience a many different symptoms. These include stretchy and fragile skin, and overly flexible joints, as well as a potential for digestive problems, bladder issues, dizziness, heart and lung problems, chronic muscle pain, fatigue, hernias, varicose veins, scoliosis, fragile eyes, and dental issues.

Why is greater awareness important?

Like many rare diseases, EDS remains a severely under-diagnosed or misdiagnosed condition, and one that is often misunderstood.

Most physicians and other healthcare professionals know little about the disease, which can resemble disorders such as postural orthostatic tachycardia syndrome. As a result, patients can go years without knowing the underlying cause of their symptoms.

The sooner a person is properly diagnosed, the sooner treatment can begin. Treatment helps to maintain, and may improve, the patient’s quality of life.

Greater awareness also tends to bring more research support and funding, which could lead to new and better therapies, and possibly a cure for the disease.

What is EDS awareness month?

May is Ehlers-Danlos syndrome and hypermobility spectrum disorder (HSD) awareness month. Activities observing the awareness month moved online this year, due to COVID-19. But, as each year, supporters posted on social media and took part in challenges.

The Ehlers-Danlos Society, which organizes the event, offered limited-edition awareness challenge merchandise — including T-shirts, notebooks, water bottles, tote bags, and sweatshirts — that could be earned by participating in acts of awareness and/or fundraising. The organization also provided downloadable materials such as brochures, posters, press release templates, and Facebook photo frames.

Community members were invited to look for creative ways to connect with each other, and to build community in virtual space — from online hangouts to hosting video game marathons. To bring awareness to others, it also supported an Acts of Awareness Challenge, a city or state Proclamation Challenge, a Virtual Walk ‘N’ Roll, and a Photo-A-Day Challenge.

The society also asked supporters to organize a virtual activity based on their hobbies and interests, with suggestions ranging from a birthday fundraiser, raffle, or costume party, to an online art class.

Last updated: Oct. 21, 2020

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Ehlers-Danlos News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.