Lipoedema is a condition that’s woefully under researched and misunderstood

Yet astonishingly can affect around 10% of women and in rare cases can also affect men.

A friend of mine recently told me that she was suffering with Lipoedema. I’d never really questioned her size, I assumed she was just curvy. As I learned more about her condition it struck me that I suspect I know quite a few people who are also suffering with the same condition. And these ladies are indeed suffering.

A survey by Lipoedema UK highlighted the significant negative emotional impacts has on people’s lives.

• 87% reported that “Overall my Lipoedema has had a negative effect on my quality of life”.

When asked “Has your body shape lead to any of the following?”

• 95% reported difficulty in buying clothes
• 86% reported low self esteem » 60% reported restricted social life
• 60% reported feelings of hopelessness
• 50% reported restricted sex life
• 47% reported feelings of self blame

Lipoedema UK Chair Sharie Fetzer states: “It is absolutely astonishing that something that is so obviously ‘abnormal’ has been ignored and misdiagnosed by the entire worldwide medical communities for centuries. Once you recognise the symptoms, you will notice huge numbers of women walking around without a diagnosis. Women who have been told that a poor diet and laziness are the cause of their heavy, tree-trunk like legs and fatty lumps that don’t go away, no matter how good their diet or how hard they exercise. These women are completely desperate for help and treatments that will mean they can lead a normal life and reduce pain.”

So what causes Lipoedema?

Lipoedema is a chronic degenerative illness that causes an abnormal build-up of fat in the body, resulting in disproportionately large limbs (and sometimes also affects the arms).

The feet and hands aren’t affected, which creates a “bracelet” effect or “band-like” appearance just above the ankles and wrists.

It also causes many symptomatic conditions, such as migraines, fatigue and extreme sensitivity.

Some doctors confuse the symptoms with those of obesity as they simply don’t know enough about the condition.

Lipoedema causes the body to produce an unusual type of fat that cannot be burned via the conventional routes of diet and exercise. Dr. Stanley Rockson, a professor and researcher at Stanford University uses the metaphor of a bank to illustrate how cells in lipoedema patients work.

“Usually fat cells expand when you overeat, and then shrink when you diet — but something goes wrong in lipoedema patients. They’re a very unusual bank, because they accept deposits but no withdrawals,” says Rockson. “So once they accumulate material, it never comes out again.”

Early research suggests lipeodema is a genetic condition in women. It seems the disease is hormonally triggered, as the onset is usually around puberty, and symptoms worsen during childbirth and menopause.

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.

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 costing thousands of pounds, making it a non-viable option for most.

A survey by charity Lipoedema UK highlights that a bleak future could await UK women with a debilitating condition called Lipoedema because life-changing treatments and surgery are not available on the NHS. Many risk their future and that of their family by taking out loans and spending savings to finance private treatments.

If you think you may be affected by lipoedema there are various support groups online, the Lipoedema quiz may also be useful.

 

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