Geelong’s Roisin Carnie facing medical bills of $99k+ because of fat cell disease, lipoedema

Lymphatic drainage massages, compression leggings worn for 16 hours a day, and now tens of thousands of dollars for surgery – this is what Roisin Carnie deals with because of lipoedema.

Roisin Carnie lives with stage 3 lipoedema, known as fat cell disease, and is facing large medical bills to have surgery to treat it. Picture: Alison Wynd

Every week, Roisin Carnie has painful lymphatic drainage massage to help ease the discomfort caused by her medical condition.

The Geelong resident also wears compression leggings for 16 hours a day, and says at 26 years of age, her quality of life is not where it should be.

Ms Carnie lives with lipoedema, a chronic condition which affects one in 10 women and leads to a build-up of diseased fat cells in the body.

The usually progressive condition was only recognised by the World Health Organisation in 2018, and is still not recognised by the Australian government.

Because of this, management of the condition and surgery are not covered by Medicare.

Ms Carnie says her abilities have decreased because of immobility caused by lipoedema. Picture: Alison Wynd

Ms Carnie, whose lipoedema is stage 3 of 4, said the cheapest cost for surgery she had been quoted in Australia – where only a “handful” of trained surgeons perform it – was $16,000-$16,500 per surgery.

She needs a minimum of six surgeries, as the lipoedema affects her legs, stomach, buttocks, hips and arms – bringing the out-of-pocket cost to at least $96,000.

“Surgery is the only way to actually take the diseased tissue out,” Ms Carnie said.

“Diet and exercise don’t work.

“I need help because I am so severe … it’s everywhere.

“Something that’s really important to me is my quality of life, and doing the things I value, and I really feel like my abilities have decreased and are continuing to decrease, as I become more immobile with the disease.”

Lipoedema is triggered by hormonal events, including puberty – when Ms Carnie’s symptoms started – as well as pregnancy and menopause.

Ms Carnie said she wanted to get surgery before having kids.

“I would love to be able to actually move around and run around with my children,” she said.

“There’s all these things that I would like to accomplish with my life that I can’t.”

Ms Carnie said conservative treatment measures including weekly $100 drainage massages and $650 compression leggings were only helped ease lipoedema symptoms, but did nothing to stop its progression.

If Ms Carnie travelled to Europe for the procedure, she said it would cost $10,000 out of pocket, including flights and accommodation.

But this would mean being in a foreign country alone for at least eight days while recovering.

She said it was “disappointing” to not have the treatment easily accessible in Australia.

“You could be a size six or 16 or 26, and have this,” she said.

“It can affect anyone who was assigned female at birth.

“It’s disappointing that we’re not being heard.”

Ms Carnie’s close friend has launched a GoFundMe page to help with expenses.

She said she was grateful for the support from the community for her life-changing surgery.

To donate visit gofundme.com/f/help-roisin-fund-life-changing-lipoedema-surgery

Originally published as Geelong’s Roisin Carnie facing medical bills of $99k+ because of fat cell disease, lipoedema