Texas woman, 28, with extremely rare disease that means her hands are ... trends now

Texas woman, 28, with extremely rare disease that means her hands are ... trends now
Texas woman, 28, with extremely rare disease that means her hands are ... trends now

Texas woman, 28, with extremely rare disease that means her hands are ... trends now

A woman in Texas was born with with unusable hands due to an extremely rare genetic condition that affects just 200 people worldwide.

Lindsey Johnson Edwards, 28, was still in her mother's womb when doctors noticed something was not quite 'right' with her hands. 

Medical experts noticed growths on her hands, leading her to be incorrectly diagnosed with another genetic condition which is more common.

However, her family later learned that the diagnosis was wrong, and at age 13, doctors at Boston Children's Hospital diagnosed her with a condition called CLOVES - or Congenital Lipomatous (fatty) Overgrowth, Vascular malformations, Epidermal nevi and Scoliosis/skeletal/spinal anomalies.

Lindsey Johnson Edwards, 28, was still in her mother's womb when doctors noticed something was not quite 'right' with her hands. Years later, she was diagnosed with CLOVES syndrome

Lindsey Johnson Edwards, 28, was still in her mother's womb when doctors noticed something was not quite 'right' with her hands. Years later, she was diagnosed with CLOVES syndrome

In CLOVES, tissues grow uncontrollably and blood vessel abnormalities lead to deformities of hands, arms, legs, or feet. In Ms Johnson Edwards' case, this led to her hands and fingers becoming extremely swollen and unusable for many daily tasks

Ms Johnson Edwards, a PhD student, uses assistive technology at home and in the classroom to help her iwth basic tasks. These include dictation software and a stand for her blow dryer

In CLOVES, tissues grow uncontrollably and blood vessel abnormalities lead to deformities of hands, arms, legs, or feet. In Ms Johnson Edwards' case, this led to her hands and fingers becoming extremely swollen and unusable for many daily tasks

'For years I ignored the diagnosis,' the PhD student said. 'I had spent my entire life bearing this other problem. So much of my life and how I understood myself revolved around a diagnosis that was being taken from me.'

'In a strange way, it’s like I went through an identity crisis, no longer knowing who I was because this key part of my life had been removed.'

CLOVES is a congenital condition, meaning it is present at birth, caused by a mutation of the PIK3CA gene, which is responsible for tissue formation while an embryo is in the womb. 

Just 200 cases have been identified worldwide. 

Tissues growing uncontrollably and blood vessel abnormalities lead to deformities of hands, arms, legs, or feet. In Ms Johnson Edwards' case, this led to her hands and fingers becoming extremely swollen and unusable for many daily tasks. 

'I do not have function in my right

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