Texas: Woman born with swollen hands due to an extremely rare condition

A woman from the , was born with disability in the cause of an extremely rare genetic condition that affects only 200 people worldwide. 28-year-old Lindsey Johnson Edwards from Texas was still in her mother’s womb when doctors noticed that something was not absolutely “right” with her hands. Experts observed tumors in her hands, thus misdiagnosing herself with another genetic condition. However, her family was informed years later that the diagnosis was incorrect – Lindsey was 13 years old, when doctors at Boston Children’s Hospital announced that she eventually suffers from a condition called CLOVES – (Frequent lipoma (fat) overgrowth, vascular malformations, epidermal caves and skeletal/skeletal abnormalities). “For years I ignored the diagnosis,” said the student. I spent much of my life enduring another problem. In a weird way, it’s like I went through an identity crisis, I no longer knew who I was, because this basic part of my life had been taken away.’ CLOVES is a congenital condition, meaning it exists at birth, and is caused by a mutation of the PIK3CA gene, which is responsible for tissue formation while a fetus is in the uterus. The tissues develop uncontrollably and the abnormalities of the blood vessels lead to deformities of the hands, arms, feet or feet. It’ssuch a nice day outside, but for me, “nice weather” means my upper body is going to swell and come really uncomfortable. I’m curious: is anyone interested in knowing what kids of things i do in order to make small adventures, like walking around the zoo, happy? In the case of Johnson Edwards, this led to her excessive swelling hands and fingers. “I have no function in my right hand and the function of my left hand depends on various factors, such as weather and so on,” she said. ‘While I have learned to use my limbs in unique ways to maximize my limited function, I rely on supporting technology, disability aids and other people’, he concludes.