Woman with rare condition that affects half her face raises awareness with face covered selfie
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”.