HELP! MY BREASTS KEEP GROWING
Former model Camilla lives in constant pain because of the rare condition gigantomastia
IT’S a scorching 36°C outside and she’s stuck inside, lying listlessly on her bed.
However, her discomfort has nothing to do with the heat – she’s pretty much bedridden no matter what the weather.
When she tries turning from one side to the other, she becomes dizzy. She has constant pain in her back, hips, knees and feet.
She also suffers from terrible headaches and battles to sleep for more than two hours at a time.
The main cause of 36-year-old Camilla Neelse’s suffering are her oversized breasts, which weigh a hefty 14kg – and they’re still growing all the time.
In 2016, after years of distress, Camilla – who lives in Roodepan, Kimberley – was diagnosed with gigantomastia, a rare condition that causes abnormal and continual growth in the breasts.
But just because there was a name for what she was going through didn’t mean doctors could solve the problem – or even bring her any kind of relief.
“I can’t even walk as far as the porch because it’s too painful,” says Camilla, who was a model and award-winning dancer when she was younger.
She’s just about given up hope, she adds.
Her breasts are so large even her 40JJ bra doesn’t fit and the pain is unbearable.
Camilla looks tired and stares fixedly at the ceiling fan that’s doing little to disperse the blistering Northern Cape heat.
Her husband, Nazeem Neethling (34), is at her bedside, a concerned look on his face.
He left his job as a petrol station manager in June to care for Camilla full-time.
He says she tries to be brave and says she’s fine on the occasions he needs to leave the house, but he know she’s not okay.
Camilla clutches Nazeem’s hand and nods. “I’m worn out and dejected. I just want my life back.”
She worked as a receptionist until October last year and in February she was declared medically unfit to work.
“I don’t know what to do any more,” she says in desperation. “I urgently need surgery to reduce my breasts. I can’t carry on like this. I love working and I don’t want to suffer anymore.”
BUT getting breast-reduction surgery isn’t as simple as it sounds. “My medical aid refuses to pay for the operation,” she says. “I’ve tried everything and argued with them many times, but nothing helps.”
Serisha Singh – senior manager of marketing, brand and communications at Bonitas, Camilla’s medical aid – confirms the surgery was declined.
“Breast reduction surgery is an exclusion as per the scheme rules.
“Furthermore the code provided by Ms Neelse’s doctor was N62, which is for
hypertrophy of the breasts. This isn’t a prescribed minimum benefit condition so we’re under no legal obligation to pay in accordance with the provisions of the Medical Schemes Act.
“We’re aware that gigantomastia is one of the causes of hypertrophy but this isn’t clear in the clinical motivation.”
Should a “clear motivated case be presented” it would be evaluated by medical experts.
Camilla has contacted a state hospital without success. “They say I’m too fat and I must lose weight. They don’t want to help me.”
Camilla maintains the problem is her breasts – not her weight.
“I gain weight because of the illness. I can’t lose too much weight because the size of my breasts would put too much stress on my back and cause permanent injury.”
She needs the extra weight to balance her breasts, she says.
Gigantomastia isn’t her only issue – she also suffers from osteoporosis, sleep apnoea and fibromyalgia, an extremely painful condition.
Additionally, she has type 2 diabetes and endometriosis – but her breasts, she says, are her biggest burden.
If something could be done about them, she knows she’d be happier and motivated to get healthier.
She sighs. “The impact on my life is enormous. Pain turns you into a monster.”
Her breasts started growing in 2008 when she was pregnant with her son. “They were so big you couldn’t see my belly. People didn’t even know I was pregnant.”
And they’ve just kept growing ever since.
Camilla was hospitalised three years ago when the pain became overwhelming. Tests were done, she says, but the results were inconclusive and she was told to lose weight and live a healthier lifestyle.
“That was the first time I was told I was too fat and I needed to diet.”
Even then Camilla was convinced her breasts were the root of the problem and in June 2016 she consulted a plastic surgeon. “He was the first doctor who believed me and wanted to help me,” she recalls.
But she needed to pay thousands of rands for breast-reduction surgery and couldn’t afford it.
OVER the past few years she’s been to see 12 specialists but there’s been no relief. The whole situation has led to the deterioration of her mental health. “I’m depressed but I know there’s a reason God lets certain things happen to people.
“I believe He’s put me on this path to help other women who suffer from the same condition and don’t know what to do.”
Camilla and her family started the non-profit organisation Gigantomastia South Africa in September to create awareness about the condition.
“We wanted to educate other women who have this illness and encourage them to have surgery as soon as they’re diagnosed – before it gets too serious.
“I don’t want other women to feel the way I do and I especially don’t want any child to have to go through what my child is going through.”
Her son a real little “grown-up”, Camilla says.
“He used to love playing outside but since I’ve become bedridden, he doesn’t go anywhere.
“He’s too scared I’ll get hurt and he won’t hear me call for help.”
She’s so grateful for the love and support of her family, she adds. “They give me the strength to open my eyes every morning.
“Most of my friends have let me down. They say I’m lazy and fat and I have to get up and go to work.
“Thankfully I have my family.”