Woman With Rare Genetic Condition Advocates for Disabled and Shares Fitness Tips
After she was born with cystic hygroma, doctors didn’t think Hannah Vaughn Setzer would live to see her first birthday – but the 28-year-old Virginia woman has defied the odds, pushing past her diagnosis to become a health and fitness blogger and disability rights advocate.
Setzer is living with cystic hygroma, a rare genetic condition that occurs when there is a blockage in the lymphatic system, resulting in fluid-filled sacs typically on the head or neck, according to the National Center for Advancing Translational Sciences.
Setzer told the news agency SWNS that doctors removed some of her cysts as a baby, but also removed facial nerves by accident during surgery, leaving her unable to smile, or close her eyes and mouth.
“My eyes just roll back in my head so it seems dark when I sleep,” she said. “It terrifies people that don’t anticipate it, and I’ve scared plenty of people that way – oops!”
The blogger said that she has learned to brush off bullying regarding her appearance, despite the fact that words do cut deep.
“I can tell you unkind things that were said to me over 10 years ago word-for-word,” she said. “They stick with you, it’s hard. Words do have weight and do matter. People are ignorant, say dumb things and are uneducated. I just have to know that for every unkind thing or unkind person, there are multitudes of people that have my back.”
Because there are still cysts in her head, neck, airway and esophagus, Setzer uses a feeding tube and tracheostomy, which inspired her to name her Instagram account Feeding Tube Fitness.
The account – which sees Setzer walk followers through her daily workout routines – has more than 1,500 followers, and has become a platform for her to spread her messages of positivity.
“I am ridiculously confident in myself. I think and know I am beautiful, I like my body, I know I’m smart and I have a lot to offer the world,” she told SWNS.
Setzer frequently features husband Brandon, whom she married in September 2017 after meeting online, on the account.
On Valentine’s Day, she shared a sweet post explaining that she is no different than anyone else looking for love.
“I have a friend in a wheelchair who is getting married to the best guy in April and when she talks to people about getting married to her boo she is often met with WOW THAT’S SO AMAZING YOU ARE GETTING MARRIED! But it is often in a patronizing tone,” she wrote. “As if someone ‘like her’ could be getting married. As if ‘people like us’ could ever be worthy of love. GET THE HECK OUT OF HERE!”
She added, “Brandon didn’t say ‘I do’ to all but the medical parts of me. He said ‘I do’ to ALL of me the sickness the health, the exploding feeding tubes, the boxes of monthly medical supplies, specialist doctor appointments, and all the in between. Boy am I grateful.”
Setzer told SWNS that she hopes her differences will one day be something embraced and not ignored by those she meets.
“I really hate when people tell their kids to be quiet. Children are curious and should be taught that people look all different ways and it’s OK to ask questions and be educated,” she said. “I’d much rather a kid learns that people with disabilities and medical conditions exist in the world than be shunned and treated like a leper.”
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