Woman with rare condition that affects half her face raises awareness with face covered selfie
By Sarah Francis
A woman whose rare condition affects half her face hopes to finally take a normal selfie following reconstructive surgery.
Ivanka Danišová, 30, was born with Goldenhar Syndrome – a congenital birth defect that causes underdeveloped cranial bones on the right side of her face.
She has become the first European to undergo life-changing treatment in the US.
Ivanka, who is one of triplets, spent most of her life covering up half her face with her long hair and battled bullies on top of medic’s pessimistic predication that she’d die young.
However, Ivanka has turned her unique looks into ammunition to spread awareness for fellow sufferers via social media.
‘Rainbow for Ivanka’ encourages people to take a selfie with one half of their face covered in solidarity.
The junior lawyer, who studied in the UK, will be travelling back to the US in September to have a final operation so she can lead a normal life.
Ivanka, from Bratislava, Slovakia, said: “When I was diagnosed, I was given no hope. I wasn’t even supposed to survive.
“When I found that out, I was stunned at first and those cruel and harsh words lingered on me long after I had left the doctor’s office. I didn’t understand why me.
“More than 27 years I had to be very careful. I could never hear on the one side and I couldn’t do sport actively.
“Underdeveloped ear canal caused that I suffered harshly every time I had a flu.
“I had to put up with severe complications during my fight and consistently weak immunity. ”
Goldenhar Syndrome, which affects 1 out of 25,000 babies at birth, can affect one side of the face or on the both and abnormalities appear mostly in the areas of ears, eyes and spine in varying degrees.
The condition also affects some internal organs leading to severe heart, kidney, lungs and oncological diseases.
In Ivanka’s case she suffers from cardiac arrhythmia and was also diagnosed with leukaemia three years ago.
She said: “My childhood was not a walk in the park, as there were moments when I was shown in a cruel way that I am “different”.
“Despite many obstacles I have always viewed myself as a child with vision and goal in her life and nobody and nothing could stand in my way.
“As I was growing up, I learned to strengthen my confidence, because when I was little, I wasn’t the brave person that I am now.
“I was a small, timid little girl who fought for every success in school, to succeed and show everyone that one day I will grow up to be worthy.”
Ivanka launched the campaign “Rainbow for Ivanka” for other Goldenhar syndrome patients.
She encourages people to take a selfie with one half of the face covered to increase awareness through social media.
She said: “We do the selfie because the biggest dream of each rainbow children one time to uncover your hand on one half of face.
“I refuse to accept that this condition should still be a “taboo” in Slovakia, and that these children are viewed as unacceptable for this society.
“Many people that met me have told me that I am a messenger of positive energy and that I give away smiles.”
She credits her other two triplets Janka and Monika for becoming the person she is today.
Ivanka said: “I know that I had the greatest luck in my life by being born among triplets.
“My sisters were always very strict with me and didn’t allow me to feel pity or give up, no matter how impossible I thought it was for me.
“I am grateful to my sisters for bringing up that brave and fearless Ivanka who is not afraid of anyone and anything.
“Thanks to my sisters I didn’t feel different, rejected.
“They never let anyone hurt me in any way.”
Now she is fighting to finish her last craniofacial treatment in America after being contacted by one of the world’s most prestigious craniofacial surgeon, Professor Russell Reid from The University of Chicago Medicine.
Ivanka added: “I hope and believe that last surgery in September will improve my life.
“It will be very difficult period of my life because I am fighting both leukemia and craniofacial fight – I would like to win.”
“In the future my biggest dream is to look at the world as healthy rainbow child and continue in my work as a junior layer, study law at Harvard and finally to have a normal life without surgery.”
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