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. In common man terms, the condition Ehlers Danlos Syndrome is directly related to those who exhibity extreme hyper mobility, and continuous dislocation of joints. 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.
Doctors, Edvard Ehlers of Denmark and Henri-Alexandre Danlos of France named this condition at the beginning 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.
A 3 year old girl in the U.K. was born with an extremely acute type 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 .
After realizing that Olivia was not sitting up or crawling at the age of one, Olivia’s mom and dad, Lena, 36, and Adrian, 41, a couple residing in Earl Shilton, Leicestershire, started doing the rounds of doctors in order to find a solution. Taking the advice of medical professionals, Lena and Adrian agreed to corrective hip surgery for Olivia. In spite of these two corrective hip surgeries, Olivia’s condition did not improve. In fact, even when wearing a cast from chest to knees, her hip would dislocate.
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.
And then an answer came from a surgeon. Something akin to a bodysuit was suggested for Olivia. Although a great idea, the bodysuit was out of the Courts’ price range. At £2,500, this second skin like bodysuit would be able to hold her muscles together allowing them to strengthen enough to hold her joints together.
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. The suit, made from Lycra, is facilitating a normal life for Olivia.
She now is able to attend nursery regularly without having to stay in bed from chronic fatigue.
Although a new way to treat extreme mobility, it seems bodysuit shapewear has brought about a possible solution.
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