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Woman Who Can’t Smile Becomes Disability Rights Advocate

What an inspiration! - by Getty Images
  • 04 Jul 2019
Woman Who Can’t Smile Becomes Disability Rights Advocate
Source: Getty Images

A woman, who doctors said wouldn’t live past her first birthday, has defied the odds by not only living well past her diagnosis but by becoming a fitness blogger.

Living with a feeding tube and unable to close her mouth or eyes, Hannah Setzer may not look like a typical fitness influencer - but that’s exactly why she’s doing it.  The 28-year-old was born with a rare genetic condition; cystic hygroma, which causes fluid-filled cysts to grow on a new-born baby’s head and neck area. 

A block in Hannah’s lymphatic system caused fluid-filled cysts to form in her neck.  When she was still a baby, doctors removed her cysts, accidentally removing some facial nerves at the same time; as a result, she still cannot smile or close her mouth and eyes.

Hannah is used to getting stares from strangers when she goes out in public but together with her husband Brandon, she is adamant they won’t stop her from doing anything.  

feedingtube.fitness View Profile
319 likes - View Post on Instagram
#lookirisihaveonetoo !! 💥TRUTHFUL THURSDAY! Feeding Tube Club Edition! 💥 . . Part of the reason I started this account was to meet others and learn about peeps with feeding tubes. Iris, a brave and sassy little girl, got a feeding tube this week and our little instagram community is rallying around her showing off our feeding tubes. . . Growing up I didn't see others with feeding tubes. I love that Iris is getting to grow up in a world where there are incredibly strong men and woman of all colors, sizes, professions, and countries living life with their feeding tubes. The reasons we all have tubes are as varied as we are, so I can only speak for myself, but we've been together for 28 years and I'll have it till the end of time, and I'm grateful. . . Ya'll know, it can be painful, full of leaks, and ruins more clothes then I care to think about. But, it also sustains me, allows me to eat on the go, in the shower, and while I'm sleeping. I am fortunate enough to be on a blended diet of real food and feed my body with good, whole, and healthy foods. I offer for Brandon to drink the blended food I make so he can be extra healthy too but he's yet to take me up on that. 🤷🏻‍♀️ . . I am very grateful to get to show my tube off to the next generation of strong and sassy women. I can only hope that friends like Iris and my mini-me baby Lydia grow up knowing they can do anything they want in life and their tubes will serve to give them the power and sustenance to achieve all their dreams. 👧🏻👧🏼👧🏽👧🏾👧🏿👊🏼👊🏼👊🏼. . . . . . #feedingtube #feedingtubefitness #feedingtubeawareness #tubie #tubefed #gtube #gtubebaby #tubie #tubielife #feedingtubes #tubiefriends #strongwomenraisestrongwomen #womaninspiringwomen #raisingthemright #nextgenerationofleaders

Hannah told BTV: “Pretty much anywhere I go people stare at me, whispering to their friends, what’s wrong with her face”.  Brandon said of those who judge them as a couple: “If someone doesn’t want to get to know someone because of their appearance, shame on them, not on me”.  

Hannah now hopes to inspire other disabled people to stay fit and healthy; her Instagram page ‘Feeding Tube Fitness’ has over 2,000 followers.  She said: “There is no reason that people with disabilities should be left out in any community and definitely [not] the fitness community”.

With thousands of views and hundreds of likes on each of her posts, Hannah is happy to have become a point of reference for other disabled people who are wanting to get into fitness.  

feedingtube.fitness View Profile
281 likes - View Post on Instagram
"To be flexible you need to practice" I saw this quote today on the @myyogafortoday page and it got me. I am working on being more flexible on and off the mat. I can get really hung up on routines and expectations and have a hard time being flexible and not in control. Being a 1.5 week old parent has taught me more about being flexible than anything else (besides marriage because that's really hard too). This week I looked forward to weight lifting and walking lots but then my feeding tube got REALLY ANGRY really fast and I've been knocked on my booty. This morning all my plans broke down and a slow walk around the block was all I could handle. I have to keep reminding myself to be flexible and kind to my body and just do what I can! Do you have a hard time being flexible too? . . . . . . . . #flexibilitytraining #flexiblegirls #moveyourbody #movementculture #movementismedicine #movementheals #moveeveryday #feedingtubefitness #adaptivefitness #disabilityfitness #iamable #abilityfitness #adaptiveathlete #iamadaptive #functionalfitness #abilitynotdisability

“I’m always happy to educate people, nothing offends me and at the end of the day if somebody doesn’t want to take the time to get to know me that’s their loss not mine”.  

Hannah has both a trach to help her breath and a feeding tube because she is unable to chew food.  

She said: “I eat through a feeding tube and that’s how I get all my nutrients in.  “I definitely have to be careful with it, sometimes it hurts sometimes it doesn’t but there’s not anything that I can’t do”.

Hannah met her husband Brandon three years ago and they have been married for just over one.  Brandon said of Hannah: “She's got a big heart and I can't imagine spending time with anybody else, we get along and enjoy the same stuff”.  

feedingtube.fitness View Profile
245 likes - View Post on Instagram
I hope your day, and mine, is less struggle-filled than these kneeling hammer curls this morning!! But, I do hope it is filled with new strength, personal bests, and trying things you think you can't do: like using 12 lb weights on your last set. It may be #simplytuesday friends but let's go make it great. . . . . . . . . #goalcrusher #goaldigger #bigthingscoming #bigthingsahead #strengthtraining #girlswholift #hasfittribe #hammercurls #feedingtube #tubie #tracheostomy #disabilityfitness #adaptiveathlete #adaptivefitness #iamadaptive #iamcapable #iamable #dreamchasers #riseandgrind #riseandshine #thrivenotsurvive #choosingjoy #hopedealer

Since Hannah looks different because of her condition, people often assume that she wouldn’t be able to follow a fitness regime.  “I think when people don’t look how our society expects them to look they just assume that person can’t do anything - like there is really nothing I can’t do”.  

Hannah has to deal with a lot of judgement and prejudice from some people who are unable to see past her looks.  Unfazed, Hannah always has a positive attitude: “Nothing offends me, at the end of the day I have an awesome husband and an awesome family and friends, I’m not missing out on anything”.

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