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Lipoedema is a chronic degenerative illness that causes an abnormal build-up of fat in the body, resulting in disproportionately large limbs and a whole host of symptomatic conditions, such as migraines, fatigue and extreme sensitivity.
It typically only affects women and is severely under-researched, meaning it is notoriously difficult to diagnose, with some doctors conflating the symptoms with those of obesity as they simply don't know enough about the condition.
However, according to one sufferer, who is currently raising funds to undergo the four operations needed to cure her, the issues relating to lipoedema transcend a mere lack of research.
34-year-old Melissa Green was diagnosed with lipoedema in her early 20s and now describes her illness as a “feminist issue” due to the the struggles she has faced in terms of getting medical professionals to take her condition seriously and fact that most sufferers are female.
Lipoedema causes the body to produce an unusual type of fat that cannot be burned via the conventional routes of diet and exercise.
Speaking to The Independent, Green explains how she has spent her life battling body image issues as a result of her misshapen limbs.
“When I was a child, I got bullied and constantly judged for being fat, even by some teachers,” she says.
The former film industry worker - Green was forced to leave her role as a locations assistant due the physical toll it took on her body - revealed that she struggles to find clothes that fit and regularly battles immense bodily pain due to the heightened sensitivity of her limbs.
“If someone pokes me, the pain is intense and lasts for ages,” she says..
“There is a huge mental and emotional toll to this condition.
'This illness ruins lives and causes untold emotional difficulties
(Melissa Green)
“Living with constant pain, bullying, and judgement; the impact on your social life, the lack of confidence, not understanding what is happening to your body and why it is not responding to your efforts to make it smaller, and all of the conditions that are a direct result of lipoedema all affect you.”
Green added that she also suffers from migraines as a result of the fat cells putting pressure on her nerves and muscles.
Due to the lack of research, little is known about what causes lipoedema and many sufferers spend years battling it undiagnosed, something Green blames on wider pressures imposed on women, who are conditioned to conform to homogenised beauty standards that are predicated on being slim - something that is almost impossible for someone with lipoedema due to the nature of the illness.
“The general societal attitudes towards women's bodies and how we are supposed to present ourselves mean that doctors and the general public dismiss us as fat and make judgements about who we are as people, calling us ‘lazy’ and ‘dirty’,” Green says.
Such pressures can exacerbate symptoms, leaving sufferers embarrassed to seek help as they mistake their condition for weight gain and subsequently blame themselves for the pain they experience as a result.
“Doctors who are consulted for help just see a fat woman and dismiss them,” she continues, explaining that she’s been turned away by several medical professionals who have told her to lose three stone before seeking treatment again.
The adverse effects that lipoedema has on a person’s daily existence are multifaceted, as demonstrated by a recent survey of 250 women with the condition which was carried out by Lipoedema UK, a charity working to get the illness recognised by all healthcare professionals.
According to the survey, 86 per cent of those with lipoedema suffer from low self-esteem, while 95 per cent reported difficulty in buying clothes and 60 per cent reported feelings of hopelessness.
Meanwhile, 50 per cent said that the illness had negatively impacted their sex lives while 45 per cent reported eating disorders.
The average age of diagnosis was 44, despite 46 per cent of respondents reporting symptoms as early as puberty.
Only five per cent of those surveyed were accurately diagnosed by their GPs.
In terms of treatment, compression therapies are one option, with sufferers wearing compression garments, such as tights, to encourage blood flow and help prevent fluid retention which can reduce pain and improve mobility.
However, Green describes these as only helpful to a certain extent, describing them as "generally useless past a certain stage".
The only permanent remedy to lipoedema is a highly specialised form of liposuction that removes all of the diseased fat cells from the body, promising to fully restore mobility.
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However, in order to fully remove the fat cells from every part of the body, the entire process can be lengthy and usually consists of a number of operations (it can take up to 10) costing thousands of pounds, making it an non-viable option for most.
According to Green, it is almost impossible to get liposuction for lipoedema on the NHS due to budget cuts and claims that the treatment is purely “cosmetic”, given that liposuction is traditionally used for exclusively aesthetic treatments.
“They refuse surgeries to people with BMIs over a certain number, which immediately rules out those with lipoedema because the condition literally makes you fat and you can't lose the weight with diet and exercise,” she says.
However, Green argues that providing the surgeries free of charge would actually benefit the NHS from an economic perspective in the long term because it would reduce the amount of money spent on treating the series of conditions that can be caused as a result of lipoedema, such as fibromyalgia, arthritis, hernias fertility problems and depression.
If left untreated, the pain and lack of mobility that most sufferers experience will only worsen over time, she says.
After leaving her role in film, Green is about to embark on studies to become a teacher, which she hopes will be an easier job to do while she is still battling lipoedema.
She is trying to raise awareness for the condition and is raising funds via GoFundMe to help her pay the £60,000 to fund the four surgeries that would free her from lipoedemia and quite literally change her life.
