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A mother-of-one has a painful condition which she says makes her legs look like tree trunks.Cara Jones, 39, has lipoedema – a common but poorly understood condition which causes pain and swelling in the legs.
It is often mistaken for obesity as it is caused by abnormal accumulations of fat, or confused with lymphoedema, which has similar symptoms.
Cara Jones, 39, has a condition called lipoedema which causes fat to accumulate in her legs
Ms Jones says the condition makes her legs look like tree trunks and that people often think she is obese
As Ms Jones’ condition is incurable, she is encouraging other women with the condition not to suffer in silence.
She says lipoedema causes constant, gnawing pains in her legs and arms.
And, during her teenage years she was plagued by anxiety about her weight, leading to a prolonged battle with eating disorders.
She is now preparing to travel to Germany where she will spend more than £15,000 on a course of private treatment which she hopes will ease her symptoms.
She is a co-founder of a dedicated UK lipoedema support group, which has a network of hundreds of British sufferers.
She said: ‘I've been aware that I've been different since I was a teenager because my legs were larger. I developed anorexia and bulimia and exercised obsessively because I thought I could shrink my legs.
Ms Jones (pictured with son, Alfie) developed the condition when she was a teenager but her legs only became painful when she was pregnant. Since the pregnancy, the pain has continued
Ms Jones says that when she was at school she was bullied because of the size of her legs. At the time, she did not know she had lipoedema so she dieted to try and reduce the size of her legs. Image shows her ankle
‘When I was 21 my weight fell to just over six stone. I was a size zero on top but a size six on the bottom. I was always worried about fitting my legs into trousers.
‘Today I feel guilty about not being able to be as active as I would like to be with my son because of the pain.’
WHAT IS LIPOEDEMA?
Lipoedema is the abnormal build-up of fat cells in the legs, thighs and buttocks.
It causes the legs to become enlarged from the hips to the ankles but the feet are unaffected.
The fat often creates a ring of fatty tissue overlapping the top the feet.
The skin often feels cold and bruises easily.
It can be very painful and can cause pain in the knees.
Lipoedema occurs almost exclusively in women and tends to start during puberty or pregnancy.
The accumulation of fat tends to be worse in people who are obese but also affects people who are a healthy weight and dieting does not help.
The cause of the condition in unknown but there is often a family history in patients.
The only treatment known to work is called tumescent liposuction but this is not available on the NHS.
It involves numbing the legs before removing the excess fat.
This treatment has been shown to be highly effective and has good long-term results.
Source: NHS Choices
It causes the legs to become enlarged from the hips to the ankles but the feet are unaffected.
The fat often creates a ring of fatty tissue overlapping the top the feet.
The skin often feels cold and bruises easily.
It can be very painful and can cause pain in the knees.
Lipoedema occurs almost exclusively in women and tends to start during puberty or pregnancy.
The accumulation of fat tends to be worse in people who are obese but also affects people who are a healthy weight and dieting does not help.
The cause of the condition in unknown but there is often a family history in patients.
The only treatment known to work is called tumescent liposuction but this is not available on the NHS.
It involves numbing the legs before removing the excess fat.
This treatment has been shown to be highly effective and has good long-term results.
Source: NHS Choices
She said: ‘Walking to school, I was called “tree trunk legs”. I had to give up dancing because I just couldn't fit into the leggings.
‘I remember my grandmother telling me to get out of her kitchen because I was too fat. It's a shame that the negative comments stick with you, rather than the positive.
‘I just wanted to be like everyone else. I wanted to wear skinny jeans.’
When she became pregnant with Alfie, now three, her son with her partner Ben Smith, 32, she started to experience painful sensations which continue to this day.
She said: ‘I became two weeks overdue with Alfie and had been experiencing noticeable pain for a few weeks - a grinding pain, like toothache - in my legs.
‘I experienced terrible bruising. Sometimes I was left looking like a leopard, because I was covered in patches of bruises.’
After several months of GP appointments, Ms Jones was finally diagnosed with lipoedema in April 2011.
She said: ‘It was a bitter-sweet experience, being diagnosed. Up to that point, the only advice I'd ever been given was “eat less, exercise more”, which had made absolutely no difference.
‘I was relieved to know what it was, but it was a blow to be told that it was incurable.’
Today, Ms Jones is registered disabled and manages her pain with a pneumatic compression pump and practices simple lymphatic drainage massage at home.
She regularly attends a pain clinic near her home in Wrexham, North Wales.
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