Newly Diagnosed: You Are Not Alone on Your Journey

Whether you are a patient or a caregiver, it’s important to remember that you are not alone on this journey with Ehlers-Danlos syndrome and that others have been in your shoes. Here’s a collection of our columnists’ words to help guide, inspire, and encourage you.

Your Health Is Not Defined by a Diagnosis

Obtaining a confirmed diagnosis is helpful for what your body is experiencing, but with or without one, your symptoms are valid and they can still be addressed, writes columnist Kimberly Stark Horn.

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Ehlers-Danlos Syndrome Took Something Away, but Gave Me More in Return

When Kimberly’s condition prevented her from continue to pursue her passion of lampworking, she grieved the loss of her ability. However, she realized she could find satisfaction in other creative pursuits.

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My 22-year Journey to Diagnosis

Columnist Karen Del Vecchio’s journey to diagnosis was 22 years long. Her predominant reaction was a sense of relief at finally knowing what was wrong with her, but it also meant she had to sacrifice other parts of her life that were important to her.

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EDS Has Taught Me to Be More Positive

Though EDS brings its share of challenges, Karen writes that it has also taught her a lot of lessons, like realistic positivity. Looking for the positive instead of the negative has helped her to change her outlook and happiness.

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