An Australian woman has revealed the emotional and financial toll of lipoedema, a chronic condition expected to cost her more than $150,000 to treat.
Lipoedema affects up to 11 per cent of women and leads to a build up of fat and connective tissue, mostly in the legs and arms.
Roisin Carnie, 24, was diagnosed with the condition last year and says her diagnosis has been time-consuming, expensive and traumatic.
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“My lipoedema started early in puberty, so my early teenage years is when I started developing the condition,” she told Sunrise.
“And I have a good life and try my best to enjoy life as normal … but obviously there is some hard parts of lipoedema.
Roisin Carnie, 24, was diagnosed with the condition last year. Credit: Sunrise
“I get very sore, heavy legs, so … I’m missing out on some quality of life just because it is so difficult to move sometimes.”
Carnie explained that for many sufferers, surgery was the only prospect of easing their pain.
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However, the treatment isn’t covered by Medicare and sufferers can quickly rack up thousands of dollars in medical bills.
“Surgery is about $16,000, and I’m required to have at least six to eight surgeries because lipoedema does affect my whole body, so my legs, arms, my tummy and my hips, so it’s everywhere, and it’s a big surgery,” she said.
Besides the enormous cost of treatment, those affected by the condition can often struggle to get a diagnosis or obtain further treatment.
Because of these challenges, Carnie is speaking out to raise awareness of lipoedema and the options available to sufferers of the condition.
“I really want other women with lipoedema to know that they’re not alone,” she said.
“And to know that they’re beautiful the way that they are, but also to advocate for themselves and be able to push their medical team to get a diagnosis and get their treatments and potentially surgeries addressed before they progress … because it is a progressive disease.”
Meanwhile, Carnie’s friend Chloe Ferrari has organised a Go Fund Me page to help raise funds to support Carnie and help her get the surgery she so desperately needs.
“Lipoedema surgery is NOT a cosmetic surgery,” Ferrari explained.
“It is medically necessary.”
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