Ehlers Danlos Syndrome, also known as “Cutis hyperelastica”, is a rare condition where there exists a defect in the synthesis of collagen. Since collagen decreases elasticity and the disorder’s severity can range from mild to life-threatening, it’s a condition that has no cure and only supportive treatments. 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.
One young girl was born with a severly radical form of this disorder. 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.
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.
Although doctors told Lena and Adrian Court that their daughter would never walk, the couple were determined to find a way to give their little girl a chance to living a normal life.
Finally a surgeon gave them a suggestion. They suggested something like bodysuit shapewear for Olivia. Despite having found an answer, the bodysuit was way out of their budget. 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 ‘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.
She now is able to attend nursery regularly without having to stay in bed from chronic fatigue.
It seems, although a new concept, this Shapewear like bodysuit may be the solution to ‘cutis hyperelastica’.
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