Lipoedema diagnosis for Carla Daly changed her life after years of pain and shame - ABC News
After years of doctors telling her she was morbidly obese despite a healthy diet, an unexpected diagnosis lifted the shame from Carla Daly's shoulders.
Key points:
- Lipoedema is an abnormal build up of fat that can impact various parts of the body
- Carla Daly was diagnosed 10 years ago, when she was 55, after being told by doctors for years that she was simply morbidly obese
- She is now on a mission to help people get an early diagnosis of lipoedema
"Doctors classed me as obese and morbidly obese — most were pretty aggressive fat-shamers," Ms Daly said.
"It was a continual life of yo-yo dieting. I tried every diet in the book.
"I was ashamed of my body and believed I could do better, and one day I would finally find the magical diet, I would lose my weight and have a normal body.
"I dieted so hard, I become malnourished and couldn't pick up my coffee cup without using two hands."
Finally, at 55 years of age, Carla was diagnosed with lipoedema — a painful, hereditary disease that leads to a pattern of adipose tissue (fat) accumulation, mostly on the lower parts of the body but also around the arms.
ABC Central Victoria: Sarah Lawrence
)It is more common in females and estimated to affect 11 per cent of Australian women, or around 1.2 million people.
Ms Daly always wondered why she had struggled to lose weight, even on the strictest of diets.
"I always felt judged," she said. "If I ate anything at all unhealthy in public, I felt very judged and I was super self-conscious about it."
Source: supplied
)The doctor who diagnosed Ms Daly was based in Adelaide, more than 600kms away from her home in Bendigo, central Victoria.
"I felt like the shame had been lifted off my shoulders because I had lived in shame up until then," Ms Daly said.
"But I was also terribly upset, that my dream of having a normal body was never going to happen.
Campaign to raise awareness
Frustrated that she had to wait so long for a diagnosis, Ms Daly is now on a mission to make sure others don't have the same experience.
She credits being a founding member and director of Lipoedema Australia, as one of her greatest achievements.
"To go from a small, incorporated body to a national charity, I think is pretty darn good."
The organisation runs support groups, online forums, conferences and helps to better educate health professionals.
"We often have some very distraught people when they're diagnosed," Ms Daly said.
"My disease was quite progressed but, if people are diagnosed [while they are] young, they can learn good management techniques.
"We encourage them to also get psychological help, because it can be a really lonely and frightening journey."
Source: Lipoedema Australia
)The group also aims to empower people not to let the disease get in the way of their life experiences.
"But it's not just the young ones" Ms Daly said.
"We had a woman diagnosed when she was 80 years old. She cried for two weeks.
"She had lived very reclusively and she felt that she had wasted her life because she was so ashamed of her body.
Source: Supplied
)"She only went to church and to be with her grown children but, otherwise, she didn't leave the house.
"But she picked herself up, went out and bought herself bathers and started doing hydrotherapy.
"She came to our Melbourne conference. [It was] the first time she'd been away from home, [so] we met her at the airport.
"We went out for a pre-conference dinner and she said it was the first time she'd ever been for a girls' night out – and she was 80.
"I get overcome talking about it. I just couldn't believe someone's life had been wasted like that."
Diagnosis struggle
Source: The Lipoedema Project
)Professor Neil Piller diagnosed Ms Daly. He is a lymphologist and the director of the Lymphoedema Research Unit at Flinders University in Adelaide.
He wants to see global standards created in what constitutes lipoedema.
"It's not diagnosed properly, because the GPs and specialists are not well educated in what lipoedema is and the diagnostic criteria for it," Professor Piller said.
"Generally, lipoedema is linked to a hormonal event in a woman's life, that might be the onset of puberty or menopause."
He said a misdiagnosis was common because the doctor or medical specialist hadn't asked enough questions.
"Pure lipoedema doesn't have any fluid associated — it's purely a genetically determined fat deposition, superficially, on the limbs," he said.
"There's also an increasing amount of evidence [that] it's good to have some compression and doing some activity and exercise. It can help reduce that pain."
Limited treatment options
Source: Ashleigh Trott
)Ms Daly said that she has spent more than $40,000 on liposuction — one of the few treatment options for the incurable, chronic condition.
"I had 15 kilos removed in my legs to help me maintain my mobility," she said.
"It's a really big operation. I ended up needing five blood transfusions because my legs kept bleeding internally," she said.
Ms Daly's next goal is to see lipoedema better recognised by Medicare.
"Some people can get a little bit back from Medicare if they have lymphoedema [a lymphatic blockage] as well, but I didn't get any government help at all for mine."
Supplied: Carla Daly
)Despite her struggles, Ms Daly has a message for her younger self.
"I regret not doing so many things with my young children, because I was embarrassed by my body," she said.
"So I would say to my younger self: 'Go out and enjoy life. Go to the beach, wear bathers and don't give a damn what other people think.
"'It's not your business what other people think', is what I like to tell myself now."
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