Hannah Vaughn Setzer is a 28-year old disability rights advocate and health and fitness blogger in Virginia. She was born with cystic hygroma, a rare genetic condition which caused her to be born with fluid-filled sacs in her head and neck.
According to the doctor’s report to her parents before birth, she had slim chances of surviving birth and will likely end up dumb and lame if she did.
Although cystic hygroma can be located in any part of the body, it is most commonly found in the head and neck region. It can be detected pre-birth through an ultrasound scan and right after birth. The presented symptoms vary and depend on the location, size, and other genetic conditions.
According to reports, Setzer suffered permanent damage to her facial nerve after some of her cysts were surgically removed as a baby. This has impaired her from closing her eyes and mouth since then. In her own words, “My eyes just roll back in my head, so it seems dark when I sleep, it terrifies people that don’t anticipate it, and I’ve scared plenty of people that way — oops!” She also has to go about with a tracheotomy tube which has sparked different mean and rude reactions from strangers.
In 2017, she married Brandon with whom she met online. Hannah had a quiet childhood as her parents always hid her for her safety. Now grown up, she has learned how to manage her tracheotomy tube and changes gauze pads as much as 20 times every day.
