Ehlers Danlos Syndrome, also known as “Cutis hyperelastica”, is a rare condition where there exists a defect in the synthesis of collagen. This inherited disorder has no quick fix or elixir because the severity of the condition can range from benign to malicious. If defined in base terms, “cutis hyperelastica” is extreme hyper mobility, which is defined by joints which bend this way and that, leading to constant dislocation of joints due to lack of muscles and collagen. 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.
Mild forms of hyper mobility exist all around. When one can bend fingers in different directions that would be a form of hyper mobility.
A 3 year old girl in the U.K. was born with an extremely acute type of this condition. This young 3 year old names Olivia Court has been to numbers of doctors and surgeon and undergone two hip surgeries in order to help her walk.
Olivia’s mother and father, Lena, thirty-six, and Adrian, forty-one, a couple based out of Earl Shilton, Leicestershire, were alerted to the condition when Olivia still could not crawl or sit up at the age of one. 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.
With incredibly weak muscles that could not support her joints, Olivia could not walk, sit up, or even crawl. After the two corrective hip surgeries, the doctors and surgeons gave up on Olivia’s condition.
After doctors told them that they would never see their daughter run, Lena and Adrian strove to find a way.
Finally a surgeon gave them a suggestion. Something attune to shapewear 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.
After learning that their local NHS Trust could not fund the bodysuit due to lack of medical evidence, the Courts were assisted by a local community group that was able to raise the money.
The bodysuit must be worn 5 days a week, 8 hours a day. The suit, made from Lycra, is facilitating a normal life for Olivia.
The suit allows Olivia to attend school regularly without bouts of exhaustion and fatigue.