Love Island star helped me discover ‘fats built-up’ situation

BBC A woman wearing sports clothes with brown hair tied up looking directly at the camera BBC

Emma Griffiths was about 11 when she developed signs for lipoedema

For years, Emma Griffiths was self-conscious concerning the reality her legs had grown out of proportion with the remainder of her physique.

But it surely wasn’t till she was watching Love Island one evening that the nurse observed contestant Shaughna Phillips had the identical form legs – and began performing some analysis.

Consultants on-line advised Shaughna had lipoedema and novice triathlete Emma then knew “that is what I had, I am not simply overweight”.

The 35-year-old mom has now joined requires extra help to be out there on the NHS for individuals with lipoedema.

Lipoedema causes fats to abnormally build-up primarily within the hips, buttocks and legs, resulting in a disproportionate form.

The precise reason behind the persistent situation is unknown however it’s not from being chubby.

Lipoedema could also be brought on by modifications in hormones and is believed to have an effect on about one in 10 individuals worldwide – though many have no idea they’ve it.

What is lipoedema? Graphic with explanation of symptoms from the NHS

Lipoedema causes fats to abnormally build-up primarily within the hips, buttocks and legs

Emma was about 11 when her legs began to really feel heavy and throb and stated they began to develop greater.

“I used to be trying within the mirror and pondering ‘there’s one thing incorrect right here, why are my legs completely different to ladies my age?’,” she recalled.

Regardless of main a wholesome way of life and at one level dropping 5 stone, Emma’s backside half remained greater and she or he suspected one thing was incorrect.

“I believed this isn’t responding to weight loss plan and train – one thing is occurring right here,” stated the mum-of-two from Ammanford in Carmarthenshire.

Talking in 2020 Love Island’s Shaughna Phillips stated she was trolled for her fats legs

“If I hadn’t had seen Shaughna Phillips on Love Island, I do not assume I’d have recognized that I had lipoedema… or at that time, had the prognosis.

“I went to see the GP and he did not know what I used to be speaking about.”

Regardless of having some NHS help, Emma requested to be referred to a lymphoedema clinic and a non-public surgeon recognized her with stage two lipoedema in 2022.

Emma Griffiths Emma Griffiths in a wetsuit, swimming cap and goggles smiling and giving a thumbs up to the cameraEmma Griffiths

Emma Griffiths had lipoedema whereas retaining herself match by competing in common triathlons

Liposuction surgical procedure eliminated 4 litres of fats from her thighs and whereas Emma stated it helped, she stated it didn’t remedy her situation.

She now manages it by a wholesome way of life, carrying compression stockings and dry brushing her pores and skin. She says that helps with swelling and ache aid.

‘My legs weighed about 11 stone earlier than surgical procedure’

Gemma Robinson has additionally struggled with lipoedema and earlier than her surgical procedure, her legs have been estimated to weigh about 11 stone (70kg).

The 45-year-old has spent virtually £70k on eight surgical procedures over two years to have 86 litres of fats and extra pores and skin eliminated.

“Each time I used to be going again to the clinic my legs have been rising,” stated the mother-of-two from Cardiff.

Gemma stated at one level she was virtually housebound and will solely get round by the assistance of a pushchair or procuring trolley.

Regardless of dropping 9 and a half stone, she stated it was primarily from her prime half.

“My mobility was reducing and I used to be going to finish up in a wheelchair with my kids pushing me,” she stated.

Gemma spent years going backwards and forwards to her GP the place she claims her signs have been “dismissed” and put all the way down to weight problems, till she noticed one thing on TV and requested for a referral.

“A physician stated to me ‘if I gave you a lettuce leaf for each meal for the remainder of your life, you’d nonetheless not lose rather more weight’,” she recalled.

Gemma Robinson says ‘individuals do not perceive I am not overweight, I’ve simply acquired lipoedema’

Gemma was recognized with stage 4 lipoedema and secondary lymphoedema.

She stated surgical procedure was “life-changing” however the psychological influence was “horrific” and now has physique dysmorphia and scarring.

“Residing with lipoedema may be very onerous,” stated Gemma. “If I used to be recognized earlier, I would not have lived my complete life pondering I used to be simply overweight, that it was all my fault.”

Gemma claimed she was provided compression remedy on the NHS and believed help for girls with lipoedema is missing.

‘Girls are placed on the scrapheap’

The Nationwide Institute for Well being and Care Excellence (NICE) – which advises what remedy and coverings ought to be out there on the NHS – has stated the usage of liposuction for persistent lipoedema was not really helpful, apart from analysis.

They stated there was not sufficient proof on how protected and efficient it was. Present remedies embody way of life modifications and compression.

Emma Griffiths Emma Griffiths's legs showing pre-surgical drawings for planned incisionsEmma Griffiths

Emma Griffiths had liposuction surgical procedure which eliminated 4 litres of fats from her thighs

The BBC has spoken to fifteen ladies throughout England and Wales with lipoedema and plenty of stated influencers and their very own analysis led to their prognosis.

Some claimed GPs dismissed signs as a “extreme bout of cellulite”, “rising pains”, weight problems and arthritis.

One teenager stated she was ready to make use of her inheritance to fund liposuction, whereas one other girl stated she was utilizing her pension funds and was keen to promote their home to fund her daughter’s surgical procedure.

Two ladies stated they developed consuming issues – and two extra stated they felt suicidal.

Over the course of eight months in 2024, an NHS physique arrange in Wales to lift of consciousness of the situation noticed 8,485 ladies – and greater than 5% (459) have been recognized with lipoedema, a freedom of data request by the BBC revealed.

That quantity is the “tip of the iceberg” in accordance with a specialist lipoedema charity that was calling for extra specialists that may diagnose the situation.

“It is completely infuriating {that a} treatable situation like that is ignored and that girls are placed on the scrap heap,” stated Lipoedema UK’s head of analysis Dr Lesley Steinitz.

A white woman with short blonde hair and black NHS branded polo top looking at the camera

Dr Cheryl Pike stated healthcare professionals believing their sufferers could make an enormous distinction

Lymphoedema specialist Dr Cheryl Pike additionally needs to extend consciousness amongst GPs.

“If anyone may consider their affected person and know that any well being care skilled can refer, it is going to make an enormous distinction,” stated Dr Pike of Lymphoedema Wales Medical Community.

The community run by the seven well being boards in Wales has began the primary psychological help service of its sort within the UK.

They need the Welsh authorities to assist fund analysis to find the effectiveness of liposuction for these with lipoedema.

The Welsh authorities stated it labored intently with the NHS’ lymphoedema community to lift consciousness of lipoedema.

“Liposuction isn’t routinely out there for lipoedema sufferers, except below sure circumstances, and surgical procedure is being provided for these with the best want,” added a authorities spokesperson.

NHS England has been requested to remark.

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