Published: 04/04/2018 Tags: Ehlers-Danlos in the News

Ehlers-Danlos Syndrome – Diagnosis makes a difference

by Carrie Johnson, originally published by the Arthritis and Osteoporosis Western Australia in the Autumn 2018 issue of Arthritis Today magazine

Some of us are naturally more flexible than others, or hypermobile as the medical people describe it. For many, being hypermobile is not a big deal and may even offer advantages in certain sports and careers. For others, these stretchy tissues can cause serious ongoing health challenges which are painful, unpredictable and sometimes disabling. My younger daughter Cate hurts her joints very easily doing things other 6-year-olds take for granted. She’s dislocated her shoulder three times at rest. Her jaw is so loose that she struggles to speak clearly, and has been in speech therapy for years. Chewing a steak is out of the question!

My older daughter Lucy is fourteen and has spent the past year dealing with severe nerve pain triggered by a dislocation which tore her hip. She was sitting at the dinner table when it happened. Lucy was bedridden for more than four traumatic months before learning how to function with persistent and often intense pain. She missed nearly two-thirds of school last year.

I’ve always been bendy myself and had my fair share of painful joints and other problems. However, towards the end of my last pregnancy, I suddenly couldn’t weight bear because my hips were dislocating with every step. I’ve had several surgeries, but the repairs didn’t last. The pain and restrictions persist nearly seven years later, and now many other joints have joined the party.

Despite years of unexplained symptoms and endless medical appointments, it wasn’t until Cate was nearly five that we were all diagnosed with the hypermobile type of Ehlers-Danlos Syndrome (EDS). EDS is the name given to a group of genetic or inherited disorders which affect collagen, a vital building block in the connective tissue or “glue” which holds our bodies together. Although EDS is increasingly recognized as causing musculoskeletal pain, collagen is the most abundant protein in the body, meaning there is almost no limit to the places where issues can arise.

Read the complete original article starting on page 22

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