Lycra Bodysuit Helps Ehlers-Danlos Toddler Live Normal Life

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Olivia Court, 3, was born with Ehlers-Danlos Syndrome (EDS), a rare genetic disease that causes the joints to be hyperflexible, to the point where the hips and knees would painfully dislocate when she tried to walk, run, or jump. Today, thanks to a revolutionary lycra body suit, the British toddler can play like other kids her age are doing.

Ehlers-Danlos Syndrome affects the body’s ability to build collagen and connective tissue which support many body parts, such as the skin, muscles, and ligaments. The disorder is characterized by articular (joint) hypermobility, loose/unstable joints which are prone to frequent dislocations, pain, and the early onset of osteoarthritis. The skin is also fragile - tearing, bruising or scarring easily - and is slow to heal after a wound.

Read: Ehlers-Danlos Syndrome Patients Seek Respect and Understanding

There are six major types of EDS, which are classified according to the signs or symptoms that are manifested. The most difficult form of the disease is vascular EDS, where blood vessels and internal organs are weakened and prone to sudden ruptures. Research indicates the prevalence of Ehlers-Danlos Syndrome is one in 5,000 – 10,000 people. It affects both males and females equally.

Most Treatments for EDS are Temporary Fixes

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The traditional treatments for EDS include braces, physical therapy to strengthen the muscles that support the joints and surgery using ligament grafts. However, these are all temporary fixes that last about five years. There is no cure for EDS.

Olivia spent the first three years of her life in a hospital bed. She underwent two operations to realign her hips, in hope that bones would form to help keep the hips in place. However, the surgeries failed. She even wore a plaster cast from her chest to her knees for eleven months, but her hips would still dislocate.

Today, Olivia wears a new form of support – a specially designed lycra body suit that covers her spine and joints. The suit, referred to as a “second skin”, was made in Australia, costs $4000 and has allowed her to overcome the bone dislocation and pain associated with EDS. She wears it eight hours a day, five days a week, and the hope is that it will help her muscules become stronger in order to help keep the joints in place.

According to the UK’s Daily Mail, Olivia’s parents received a generous donation from a local community group (Barwell and Earl Shilton Lions Club) to help pay for the as-yet unapproved treatment. According to mother Lena, the suit has “made the world of difference. She can play as a little girl should be able to.”
She notes that “a year ago, she [Olivia] couldn’t even stand up unaided and now she is running around everywhere. It really has changed her life.”

For more on Ehlers-Danlos Syndrome, visit the Ehlers-Danlos Syndrome network CARES Inc, founded by EDS patient Lynn Sanders or the Ehlers-Danlos National Foundation website.

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