A disorder known as Ehlers Danlos Syndrome “Cutis hyperelastica’, is a condition that basically is a defect in the construction of collagen. This inherited disorder has no quick fix or elixir because the severity of the condition can range from benign to malicious. 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. When one looks at numbers, one in every ten thousand to fifteen thousand are afflicted with any particular 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.
Examples of hyper mobility would be circumstances where one can bend their toe fingers all the way down or rotate their arm out of it’s socket and bring it back.
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.
And then an answer came from a surgeon. Something akin to a bodysuit was suggested for Olivia. It seemed like a great idea, but it was incredibly expensive. With a price tag of £2,500, this second skin like bodysuit was designed to keep her joints together by strengthening her weak muscles .
However, the Courts were disheartened when they learned that the local NHS Trust would not fund the bodysuit since there was not enough medical evidence to support it’s effectiveness. Thankfully, a local community group raised the money.
The ‘second skin’ must be worn five days a week and eight hours a day. Because of the suit, which is made of Lycra, Olivia is not able to lead a normal 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’.
