Woman Born With Rare Face Condition Is Raising Awareness And Inspiring Others
This woman with Goldenhar syndrome refuses to hide her birth defect any longer.
Ivanka Danišová was born a triplet with a rare condition called Goldenhar syndrome, which has affected one side of her face.
She spent much of her life covering up and feeling the need to hide her birth defect, but now she’s speaking out and taking a stand.
Danišová, who is from Slovakia, is now 30 years old, and is determined to create a better life for herself and for others with Goldenhar syndrome.
The rare congenital birth defect affects the development of the face, ear, eyes and spine, mainly, but can also affect the heart, lungs, kidneys and central nervous system, according to the National Institutes of Health.
It’s estimated that between one in 3,500 and one in 25,000 babies are born with Goldenhar Syndrome, and the disorder occurs twice as often in males than in females. Doctors are not sure what causes the defect to occur, but they have found that genetics plays a role in a small number of cases.
In Danišová’s case, the bones on the right side of her face never properly developed, she is deaf in one ear and also has a heart arrhythmia.
On top of that, Danišová has also been diagnosed with leukemia. But she’s not letting any of that stop her from achieving her goals.
She’s started the Rainbow for Ivanka Campaign to raise awareness about Goldenhar syndrome and to help normalize the condition. She posts pictures of herself on social media covering the affected portion of her face as a means of bringing attention to Goldenhar.
“The rainbow is a symbol of hope, strength, fragility, purity,” she wrote on the Rainbow for Ivanka funding page. “My goal and life wish is to fight for kids like me in Slovakia and in the Czech Republic.”
She wrote that she was compelled to speak up after seeing the syndrome ignored for years.
“There is no foundation, project or campaign,”Danišová wrote. “And the reason is that in Slovakia and in the Czech Republic there are only about 30 children with this diagnosis, and it seems like there was not enough time and space for the medical science and the society to find a solution and to help these children, I think. I have decided to fight for other children, too.”
She credits her fellow triplet sisters with helping to keep her spirits up and defend her from bullying.
Danišová came to the United State for craniofacial surgery at the University of Chicago.
Before her first surgery, she noted that the journey would not be easy. But she was more than up for the challenge.
“It will be very difficult period of my life because I am fighting both leukemia and a craniofacial [surgery] — I would like to win,” she told Caters.
Danišová will undergo another surgery in September of this year.
“After being told by many for years that it cannot be done, Professor Russell [the doctor performing the surgery] was the gift from heaven. He’s my hero,” she explained to Good Housekeeping. “I hope and believe that [this] last surgery in September will improve my life.”
In the future, she hopes to “continue as a junior lawyer, study law at Harvard and finally to have a normal life without surgery.”
For more information and to follow along with her journey, visit the Rainbow for Ivanka Facebook page.