Photo: home of Chiari Public Group in Facebook
A resident of the U.S. city of Worcester, suffering from a rare disease, can die if careless turn your head. About it writes edition Daily Mirror.
The 33-year-old Rachel Pighills (Rachel Pighills) found the instability of the middle atlantoaxial joint, located between the first and second cervical vertebrae. When she turns her head, there is a dislocation of the Atlanto-occipital joint connects the occipital bone with the first cervical vertebra. Any careless movement can result in internal decapitation — a complete separation of the skull from the spine.
“I live in constant fear of paralysis and death, — says the woman. It is a sensation hard to describe. It seems that I absolutely can not do anything. Every day for a few hours, go to work, then come back and lie horizontally on the sofa. Nothing more.” To limit the mobility of the head helps neck brace, but you can only wear four hours a day — otherwise the muscles of the neck begin to weaken, which in her situation even more dangerous.
Health problems began two years ago when Rachel started taking the drug, regulating the activity of the immune system. Over the next two months, she three times was admitted to the hospital due to severe vomiting, and in six weeks lost 13 pounds. Although the woman almost immediately refused the medication, the symptoms disappeared. Soon she was diagnosed with Addison’s disease where adrenal glands do not produce hormones in sufficient quantity.
“I always felt tired and could fall asleep at any moment, she remembers. — In August 2018, we moved closer to my work and school, daughter, to not have to drive so far.” During the journey a woman smashed my head on the ceiling fan, then her condition has deteriorated. “His head was spinning even more, she says. — It seemed that she was too heavy, and the neck does not stand up. At work, I supported her with my hands. The weight seemed enormous to me was not strong enough”.
In may 2019, Rachel was diagnosed with Arnold Chiari malformation — pathology, in which the lower part of the brain descends into the hole at the base of the skull through which passes the spinal cord. In June she found Platemail — impression of the base of the occipital bone and the clivus in the posterior cranial fossa, and then middle atlantoaxial instability of the joint.
According to women, this disease occurs so rarely that there are only three specialists who know how to treat it. For the operation in Barcelona, where one of them, she needs 135 thousand pounds (10.4 million rubles), which it hopes to collect on GoFundMe the crowdfunding service.
Video, photo All from Russia.