Living with a rare disease: Auckland teen writes book about how hard it is looking different to everyone else

Kate Chandulal was born with Crouzon syndrome, a genetic condition which her mum Bridget also has.
TORIKA TOKALAU/FAIRFAX NZ

Kate Chandulal was born with Crouzon syndrome, a genetic condition which her mum Bridget also has.

 At 13, Auckland teenager Kate Chandulal has already had 121 operations.

She was born with Crouzon syndrome, a rare genetic condition that causes the bone of the skull and face to fuse.

In 2012, Kate was diagnosed with scoliosis, a condition that causes the spine to abnormally rotate and curve sideways. 

She also suffers from several other conditions, which have left her dependant on five tubes in her body that help with ordinary functions like breathing and eating.

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More than anything, she wants to  foster empathy and understanding for people who were not like everyone else.

So, Kate has written an emotional book - A walk in my shoes -  about looking different to her peers and living life with several life-threatening medical conditions. 

"I wrote the book because I wanted to spread awareness to other people, especially to children, about what it's like being me, and that it's okay to be slightly curious about scoliosis but not afraid," she said.

"You can make friends with me because I'm just like everyone else on the inside."

In her book, Kate described feeling overwhelmed when people stared and pointed at her.

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"I feel like a spotlight is shining on me and I can't escape its glare," Kate said. 

"But mostly I feel sad, like a grey cloud has blocked out my sun.

"Of all the things I go through in life, being treated meanly is the worst of all."

Kate, who lives in Howick, has spent nearly her whole life at Starship Children's Hospital.

To date, she's had 121 operations.

Kate's mum Bridget, who also has Crouzon syndrome, said she had always wanted her daughter to feel great about herself despite her medical challenges.

Growing up with Crouzon Syndrome in the 60s was hard, Bridget said.

"It was a whole different ball game with children who looked different, or behaved differently.

"The way society dealt with it was to hide it, to not say anything, to treat it as if it was something shameful so I was very determined that Kate was not going to be treated that way."

She's always told Kate to remember her importance.

"Kate's not shy about anything - not one bit.

"I've always told her to be proud of who she was, know that she was important and that she had every right to be here like everybody else."

- A Walk in my Shoes is available to purchase at schools registered with Scholastic New Zealand.

 - Stuff

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