How fans helped save a Gold Coast TikTok star from serious illness

Xanthia Efthymiou was thrilled when she started dropping dress sizes - until fans started pointing out something unusual about her new body. Photo / TikTok @itsxanthiaa

This article was one of our best read stories of 2022.

A Gold Coast woman has revealed how her online following saved her life after noticing a key detail about her body.

Xanthia Efthymiou began documenting her weight loss journey online after an appointment with a doctor about her bad back led to him pointing out her size 22 frame could lead to future health problems.

At the time, she was only 17 and began her lifestyle overhaul.

"I think my main motivation was my future, I wanted to be able to be active, healthy, I could barely walk up a flight of stairs without being out of breath and that worried me," the now 22-year-old told news.com.au.

However she started to notice the way she was monitoring her food became dangerously close to symptoms of an eating disorder and so Efthymiou saw a specialist to help her best proceed in her journey.

She started to exercise and manage her food intake in a healthy way, leading to her hitting her goals and documenting her journey on her TikTok page.

Xanthia began her weight loss journey in 2017. Photo / TikTok @itsxanthiaa

But as she dropped dress sizes, Efthymiou noticed that the shape of her legs weren't changing at all.

"It wasn't until I was closer to my lowest weight that I realised my legs hadn't changed, and it was frustrating," she said.

"It was so mentally challenging working out, eating well and doing everything you thought was 'right' just for no progress to be seen."

However, her online following had her back, with dozens messaging her to ask whether or not she knew she had lipedema, which is a condition that mainly impacts women.

Lipedema is when there is an abnormal accumulation of fat under the skin, creating a painful swelling in the legs, thighs, buttocks and even the arms.

Efthymiou was taken aback and confronted by the complete strangers asking her about a chronic condition she'd never heard of.

"I initially went to my doctor and he said he didn't know much about the condition, he encouraged me to try and lose a little more weight," Xanthia said.

"I ignored him and just looked online and found there was a specialist in my area and booked in with him. I was basically diagnosed on the spot.

"Lipedema has a certain look and you can tell when someone has it."

But it wasn't just swollen legs as there is a multitude of other things that come with lipedema.

Xanthia said it's difficult to know she will live with this for the rest of her life. Photo / TikTok @itsxanthiaa

"I had to do multiple tests to confirm I didn't have other things that come with lipedema such as varicose veins and a hole in the heart," she said.

"These tests were so scary and I think that's what freaked me out the most, it was very overwhelming."

Until her diagnosis, Efthymiou thought everyone lived with the pain she had, and that her difficulty walking around was normal.

The hardest pill to swallow is knowing this is something Efthymiou will have to endure for the rest of her life.

One of the few ways to manage lipedema is by undergoing surgery which essentially removes the accumulation of fat under the skin.

While Efthymiou waited for surgery – which cost A$30,000 ($33,080) for the hospital stay, surgery and anaesthesia – she managed the illness by eating an anti-inflammatory diet, walking, wearing compression garments and having manual drainage massages.

Efthymiou recently underwent surgery and is now in the second stage of recovery, with things looking positive.

"The first three days post operation were really hard, I felt really weak and had a bad reaction to strong pain killers as well, so I couldn't take anything strong," she said.

"But past day three, the recovery has actually been quite easy. I can walk around a lot; my bruising has gone down and I am now entering my second phase of recovery right now which means things are going to become so much easier from here."

After booking her appointment in December 2021, Xanthia just had her surgery. Photo / TikTok @itsxanthiaa

She said now she is going to be able to move better and there will be improvement on her everyday life.

Efthymiou plans to take a break from the surgeries to assess her future and what her body needs.

"I now know I have this condition and know what I need to do to maintain it so I think life is going to be a lot easier after this," she said.

Since her discovery of her diagnosis, Efthymiou has been open about sharing how lipedema impacts her life on her TikTok account to her 1.7 million followers.

"I think my main goal is to spread awareness about lipedema without making it scary, I try and keep it as light and positive as possible while also sharing how it can affect the everyday person," she said.

"I get so many messages from people every day sharing that they were diagnosed after seeing my content and that's my main intention with why I post about it."

She said it brings her joy to see younger people using their voice to get diagnosed early.

"Too many times I've heard stories of older women getting diagnosed when it's too late and they are no longer able to walk," she said.

“There are many stages on lipedema, and can progress to something called lipo-lymphoedema and I hope sharing my story I can help people get the diagnosis before it’s too late.”