A WOMAN who suffers from a painful fat condition that can make her legs look like “tree trunks” has spoken of her years of turmoil living with the disorder.
Mother-of-one Cara Jones, of Wrexham, suffers with lipoedema, which sees an abnormal build-up of fat cells in her legs, thighs, buttocks and arms.
The 39-year-old has had the condition since she was a teenager, but it was not until 2011 lipoedema was formally diagnosed.
For years doctors told her all she needed to do to get her legs back to normal size was exercise more and eat less, while bullies tormented her during her school years for the way she looked.
But now Cara, who is due to undergo life-changing surgery in November in a bid to combat the condition, is telling her story to raise awareness of it.
She said: “I’ve had it since I was young and despite being an active and healthy teenager, I couldn’t shift it.
“I was diagnosed with lipoedemia in 2011 and I just wish I'd have known sooner. I was told to eat less and exercise more. People with lipoedemia are made to feel like lazy over-eaters.
“Most women when they see their doctor are sent away and told they are obese and that they should eat less and exercise more.
“Lipoedema is a painful disorder which is not diet dependent. Dieting can’t
get rid of the unwanted, painful fat.
“I suffered from an eating disorder when I was younger and eating disorders and lipoedemia go hand in hand.”
Sufferers of lipoedema see their legs become symmetrically enlarged from the ankles right up to the hips, but the feet and hands are unaffected.
The build-up of fat often creates a ring of fatty tissue overlapping the top of the feet, as if there were tight bands around the ankles.
The condition occurs almost exclusively in women and is passed on genetically. Cara’s mother also has the disease.
Cara, who lives with her partner Ben Smith and
four-year-old son Alfie, said she suffers with pain on a daily basis due to the condition.
She said: “It feels like a constant, gnawing pains in my legs and arms.
“It also makes me extremely tired as my lympth system is compromised.
“I also suffer from muscle weakness and circulation in my hands and feet is poor.”
Cara, who is a trustee of the charity and support group Talk Lipoedema, said she now wants to raise awareness of the disease.
“It’s surprising because it affects 11 per cent of women worldwide but people largely don’t know anything about it. I get frustrated because lipoedema is often mixed-up with lymphoedema, which gets a lot more attention because it’s more closely associated with cancer.
“I was bullied terribly in school, you know what children can be like. Other kids would make such cruel comments. Some would call me tree trunk legs.
“It was dreadful. But it all came full circle when I’d appeared in the media with my condition and a guy I went to school with who had bullied me contacted me and said ‘I’m sorry, I had no idea’.
“That was a big moment for me. I felt incredibly emotional about that,” said Cara.
“I now want as many people as possible to be made aware and informed about lipoedema because it’s a painful condition.
“Sufferers need to know that it isn’t their fault.”
Currently Cara, who is registered disabled, manages her pain with a pneumatic compression pumps and practices simple lymphatic drainage massage at home.
In November, she is due to undergo life-changing surgery in a bid to combat the condition. Cara will travel to Germany for pioneering treatment to take away the fat called water assisted liposuction (WAL).
The treatment will remove the fatty build-up in three stages.
Such treatment is not available on the NHS, so she is footing the £15,000 bill herself.
She said: “This kind of treatment is very kind to your lymphatics.
“You have to be careful anyway as due to the illness, the lymph system is inflamed and abnormal.
“This treatment will change my life. If I don’t have it I could end up in a wheelchair.”
Before the surgery, Cara is due to appear on a show called “What have I got” on Sky channel TLC.
Each episode the show highlights a different condition. Cara’s episode, focusing on lipoedema, will air on October 9 at 8pm.
She said she is keen on setting up a local support group to offer face-to-face support and urges anyone with the condition to contact her on contact@talk lipoedema.org or visit www.talklipoedema.org