A WOMAN born with an incredibly rare facial condition that affects one in 50,000 babies says she gets ‘mean comments’ from people online and in person.
But she feels beautiful and doesn’t let her condition – or haters – stop her from living her life.
Jam PressAnah Kryzanowski, 19, was born with a rare facial condition Treacher Collins syndrome[/caption]
Jam PressThough she’s dealt with trolls and people stare at her, Anah said it doesn’t stop her from living her life[/caption]
Jam PressIn fact, Anah says she feels grateful for her condition and has learnt to love herself[/caption]
Anah Kryzanowski, 19, was diagnosed with Treacher Collins syndrome when she was just a baby.
The genetic condition affects one in 50,000 babies and impacts the way the face develops, especially in the cheekbones, jaws, ears and eyelids.
It often causes issues with breathing, swallowing, hearing and speech.
For Anah, her cheekbones and ears have been affected the most, causing them to be underdeveloped and seeing her have multiple surgeries throughout the years.
The teenager also often has to deal with people’s reactions to her appearance, but is now on a mission to raise awareness.
“There have been mean comments in person and online,” Anah, an educational assistant and respite assistant, from Alberta, Canada, told Jam Press.
“People still stare, but I have grown in who I am and in confidence, and I do not let the comments and stares bring me down or change me.
“[My appearance] may shock some but I am actually so thankful for who I am and what I look like.”
To help her breathe, Anah has had a cleft palate surgery and a tracheostomy – a procedure to help air and oxygen reach the lungs by creating an opening into the windpipe from outside the neck.
She also had two operations to fit her bone-anchored hearing aids, when she was five years old and again when she was 14.
The teen used to have a gastronomy feeding tube to help her eat but this has since been removed.
Anah said: “I also have an overbite which affects my speech in pronouncing B, P and M sounds.
“I have to use a bi-pap at night too, a non-invasive ventilation device with a mask, to help with my breathing due to my smaller airway.”
Despite some of the everyday challenges Treacher Collins syndrome presents, Anah has had an strong support system throughout.
“I am very supported in who I am by my family,” the 19-year-old said.
In fact, she’s thankful to be living with her condition.
“I have gotten opportunities I never would have had without my condition,” Anah explained.
“I have been able to attend craniofacial retreats, where I have made life-long friends who relate to me and what I’ve been through.
“I live life just as anyone else would! I also do not struggle with anything specifically.”
Anah shared that loving herself is something she’s taught herself over the years.
”When I was around 12-14, I felt neutral about my face; I was not in love with my face as I am now.
“But I had an amazing support system that helped me stay positive.
“I have a twin with the same condition as I do, she is my main support and is one of the main reasons I am as confident as I am today!
“Having a twin means that I always have a friend to be with in every setting, which means making friends and going out to fun events is and was so much easier.
“I did have some fear around surgeries, but overall I knew I would be okay.”
Anah currently works as a substitute teacher and respite worker for children with disabilities and is studying at university to become an occupational and physical therapist assistant.
She said: “I currently live at home and plan to move out a year after I finish my studies, which is this year.
”I have chosen this path because I want to help people as people have been helping me my whole life.
“I adore kids especially and want to make a positive impact on people’s lives.
“The kids I work with have disabilities and facial differences of all kinds and I feel a special connection to all of them.
“The preschool I work at, I actually went to when I was little.
“I am now able to work side-by-side with teachers who once taught me.
“I also love my job as it allows me to improve my sign language.”
In a bid to help and inspire others with the same or similar conditions, Anah also shares details from her life on Instagram (@anahkryzanowski).
She has also appeared on Shake My Beauty – a TV show that aims to redefine what beauty means – to share her story.
Anah added: “I just want to say to anyone with the same condition as me, be yourself!
“You are absolutely stunning inside and out, so be confident in who you are and what you look like.
“You are unique and born to stand out.
“Being different is beautiful, having a disability of any kind does not make you worth less.
“All in all I would not change anything about me or what I look like even if I had the chance!”
Jam PressAnah said: “Being different is beautiful, having a disability of any kind does not make you worth less”[/caption]