The haunting Waardenburg syndrome…only five people in the world have this condition


Waardenburg syndrome is a group of genetic conditions that can result in hearing loss and change in colouring of the hair, skin and eyes. It is a rare genetic disorder characterized by varying degrees of deafness and pigmentation changes. The disorder is named after Dutch ophthalmologist Petrus Johannes Waardenburg who discovered this condition in 1947.

These are the five people in the world who have the Waardenburg syndrome:

#5 Ketlen Silva de Jesus

This 11-year-old girl is making headlines after she revealed she had Waardenburg syndrome, on Brazilian TV. Ketlen Silva de Jesus was scouted by Brazilian photographer Joao Pedro Sampaio while shopping with her mother in Rio. She already has a ton of offers from major brands and ad agencies. When her mother first saw her at the hospital, she thought that they had swapped her with someone else’s child. Ketlen was born totally deaf with sapphire blue eyes.

#4 The Senegalese girl

This photo was uploaded to Reddit by a user known only as Ayreis. The user uploaded this picture of this little Senegalese girl who is believed to have Waardenburg syndrome. “I am a Peace Corps volunteer in Senegal, West Africa. I live in the same village as this girl, Suru. I believe she has Waardenburg Syndrome. Along with the stunning eyes, she is completely deaf and has a patch of white skin on her right hand,” is the caption of the photo uploaded.

#3 Paris Jackson

Late Michael Jackson’s 19-year-old daughter has cold, almost transparent blue eyes which is definitely one of her most notable features. In an interview with Teen Vogue, Paris’s makeup artist Jo Baker revealed that her baby blue eyes are a result of a genetic condition. While Jo did not name the disorder outright, it is believed to be the Waardenburg syndrome. Paris does not suffer any other symptoms of the disorder.

#2 Abushe

This eight-year-old Ethiopian boy, Abushe, from Jinka, has been mesmerizing people with his shocking blue eyes. He has Waardenburg syndrome. His parents used to fear that he was blind as a child. Since they were extremely poor, medical treatment for their son was never a possibility. He is not blind and seems to suffer from no other symptoms. His parents now see his differences as a gift from God. The boy often gets bullied due to his unusual looks but hopes to push past all that and become a successful footballer.

#1 Stef Sanjati

Canadian blogger Stef Sanjati revealed that she has the Waardenburg syndrome. The vlogger has been posting on YouTube for almost a decade, but it was one particular video on her condition which shot her to fame.

My face: Waardenburg syndrome is the title of the video in which Stef speaks about the genetic mutation. She is also deaf in her left ear.

She underwent facial feminization in Boston and has documented every bruise and bandage on her YouTube channel. “For a long time, I couldn’t look in the mirror, and that wasn’t because of being trans, it was because of my face and kids making fun of me,” she said. Check out this video by her talking about her condition:

4.4K shares. You should too.

We want to hear your thoughts.
Join the discussion!