Fight Dependency

A disorder known as Ehlers Danlos Syndrome “Cutis hyperelastica’, is a condition that basically is a defect in the construction of collagen. Ranging from tepid through ragingly obtrusive to normal living, this decreased collagen induced disorder has no known cure, only supportive treatments. In lay man terms Ehlers Danlos Syndrome is defined by extreme hyper mobility, which means the joints bend in each and every way without any clarity as to which way they may bend and when, leading to constant dislocation. Different ranges of hyper mobility exist and studies show that 1 in every 10,000 or 15,000 is afflicted by any range of hyper mobility.

Two Doctors, Edvard Ehlers of Denmark, and Henri-Alexandre Danlos of France, defined this condition at the turn of the 20th century.

Mild forms of hyper mobility exist all around. When one can bend fingers in different directions that would be a form of hyper mobility.

One such girl, born in Earl Shilton, Leicestershire, was born with a very extreme form of this condition. Three year old Olivia Court, afflicted with the incredibly severe form of this condition, has been through two hip surgeries and has been taken to countless doctors and surgeons in order to find a way to help her walk .

At the age of 1 when she still could not sit up or crawl like other children her age, Olivia’s parents, Lena, 36, and Adrian, 41, a security engineer, based in Earl Shilton, Leicestershire did the rounds of doctors to figure out what was solution for their daughter. After meeting countless numbers of doctors and surgeons they went through with the two hip surgeries. However, Olivia would end up with a dislocated hip, even when wearing a cast for eleven months that covered her from her chest to her knees.

Since her muscles were not strong enough to support her joints, she was not able to sit up, crawl, and definitely not walk. Despite years of experience with different levels of the condition, Doctors were clueless in finding a solution to her condition.

Despite being told that Olivia could never take steps, Adrian and Lena stubbornly searched for an answer to her problem.

Finally a surgeon gave them a suggestion. Something akin to a bodysuit was suggested for Olivia. Although a great idea, the bodysuit was out of the Courts’ price range. With a price tag of £2,500, this second skin like bodysuit was designed to keep her joints together by strengthening her weak muscles .

After being turned down by their local NHS Trust due to lack of medical evidence, the Courts turned to a local community group called Barwell and Earl Shilton Lions Club, who raised the money.

Olivia must wear the suit for 8 hours a day and 5 days a week. Made out of Lycra, the suit has allowed Olivia to walk. She is now beginning to lead a normal child’s life.

The suit allows Olivia to attend school regularly without bouts of exhaustion and fatigue.

It seems, although a new concept, this Shapewear like bodysuit may be the solution to ‘cutis hyperelastica’.

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Tags: bodysuit shapewear, shapewear