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Body

The rare disease which causes Wellingtonian Chyanne Bevan to gain weight when she exercises

''I was doing lots like Waka Ama, dragon boating, softball and cheerleading. But I was getting bigger and bigger,'' she tells.

By Cloe Willetts
For years Chyanne Bevan's family believed her escalating weight was caused by secret food binges.
Strangers on the street abused the Wellingtonian, calling her lazy and obese.
But the struggling former cheerleader was hitting the gym four times a week and sticking to a strict diet. When she was finally diagnosed with a serious condition almost three years ago, everything started making sense. Chyanne's changing shape, ill health and mood swings were the result of Cushing's Disease.
"I'm looked at as a fat girl who eats takeaways and doesn't exercise, but it's not the case," says the 23-year-old, who works as a landlord at her parents' property investment business.
"I hate going to get fish and chips, so I send my partner Sam in, because people look at you like you shouldn't be eating it. I actually hardly ever do and I'm this size because of a disease."
Love and support: Chyanne is glad to have her partner Sam on her side.
Cushing's Disease occurs when the body produces too much cortisol, the stress hormone. Symptoms include thin and blotchy skin that bruises easily, a round moon face, poor bone density, increased blood pressure and weight gain – especially around the stomach and upper back. There's also pain and exhaustion, as well as depression and anxiety.
"Cushing's is created by a tumour on your pituitary gland, which is a small pea-sized gland on the brain that releases hormones," says Chyanne, who weighed 125kg at her heaviest. "It's like being a walking lollipop because my middle is huge but my arms and legs are thin."
Chyanne remembers being bigger than her friends at high school, despite exercising.
"I was doing lots like Waka Ama, dragon boating, softball and cheerleading. But I was getting bigger and bigger," she tells. "I was quite a chubby kid and always getting sick, but we'd put it down to a
crap immune system and being big-boned."
Chyanne aged eight.
She didn't have a problem keeping up with her friends when they went for runs and walks but tells, "They were all losing weight and I was gaining. I was too insecure to wear cute outfits and go
to parties like they did, so I stayed home."
By 20, Chyanne was working with a personal trainer and managed to lose 10kg, but she still looked the same and the weight quickly crept back on.
"People, including our family doctor, blamed my weight on binge eating and I hated myself," recalls Chyanne, who met Sam Evans, 23, online eight months before she was diagnosed. Eventually, the GP organised a series of blood and urine tests.
Getting ready for her first school ball at 17.
It was confirmed Chyanne's weight problem was the result of Cushing's Disease, and surprisingly, the gym was making her bigger!
"Exercise and stress release cortisol, so it was actually making it worse," Chyanne explains. She was passed on to a specialist at Wellington Hospital and learnt she might have had the condition since childhood.
"I was forever sick and if I hurt myself it took ages to heal, plus I had bad acid reflux," she recalls. "I was going to the toilet up to 10 times a day without control of when I needed to go."
Every time she walked or exercised, Chyanne felt throbbing pins and needles all over her body. "I lost a lot of friends because I had no control over my hormones or anger and I'd lash out," she admits. "I lost hair, eyebrows and eyelashes, but grew facial hair, which are all symptoms."
Chyanne in July 2018 and January 19. She has been through multiple surgeries to try and cure her disease.
But there was hope for Chyanne, who was offered surgery on her pituitary gland to try to control the release of cortisol. Sam, her number-one supporter, was there for three surgeries.
"I just want Chyanne to be happy and for her health to be good. I don't care about looks because life's about a lot more than that," enthuses the Masterton-born refrigeration technician.
"I told her to stay positive and that we're only in a season. This is a part we've got to get through and our future will be a lot better."
After the unsuccessful surgeries, Chyanne had her last procedure in October to remove her adrenal glands, which sit on top of the kidneys and also affect cortisone. It means her body no longer releases the hormone and she'll need to take more than a dozen pills every day for the rest of her life.
"Without the support of Sam, my parents and siblings, I wouldn't have had the courage to undergo all the surgeries," she admits. "They walked me in every time with encouragement not to give up."
"All I want is to be healthy and to live life with Sam, our friends and fur babies," Chyanne says.
Now it's a waiting game to see if her Cushing's Disease is cured. "I know someone who had Cushing's and the same adrenal surgery, and she gradually lost all the weight," tells Chyanne, who has dropped 15kg in the past few months.
She's hoping speaking about her rare condition will help curb some misconceptions about body shapes and sizes.
"All I want is to be healthy and to live life with Sam, our friends and fur babies," says the doggy mum of Sid, 10, and Mini Cooper, two, who are her biggest comforters.
"Everyone just treats me as obese and it took a while to come to terms with having Cushing's Disease. But it's not my fault I'm this size."

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