AN AVID swimmer claims doctors accused her of ‘secret eating’ when a rare condition saw her pile on eight stone of fat – no matter how much she exercised.
Clodagh Moane, , from Birmingham, West Midlands claims she feels ‘trapped inside someone else’ and is in constant pain from the rapid fat buildup in her body.
The 20-year-old began putting weight on her legs and arms two years ago, seeing her shoot up seven dress sizes and balloon from 11 stone to more than 19 stone.
She claims she faces being in a wheelchair before she is 30 if she does not have surgery to remove the flab.
Despite trying ‘every diet going’ and hitting the gym five days a week, nothing would shift the weight – and doctors allegedly accused her of secretly eating.
Clodagh was formally diagnosed with stage two lipoedema in January 2019 after spending 18 months trying to convince doctors that her weight gain was not due to her diet.
Just one in every 72,000 people is thought to have lipoedema, a condition which causes an abnormal buildup of fat in the legs, buttocks and arms.
Clodagh claims you can see her body change ‘week by week’ and is now too embarrassed to leave her house beyond going to work.
Mum Suzanne Moane, 53, says it is heartbreaking seeing her daughter ‘hiding away’ due to her looks.
After she was refused NHS funding for surgery, the family are fundraising £70,000 to pay for Clodagh to have six operations to remove the excess fat from her body.
Clodagh said: “The way I have to describe it to people is like I am trapped inside someone else.
“That’s the only way I can describe the way it feels. I just don’t feel like the same person at all.
“I show people pictures of what I used to look like then and they can’t believe the difference.
“Looking at me now it’s hard to believe I was ever that small but I was smaller. I would always be tall but I was also quite slim. For it to be this extreme now is just so weird.
“I always used to go to the gym every night after work five days a week. I would do cardio, swimming, all the usual. I really enjoyed doing it – I still do, but I can’t go now.
“I’d love to go. But now I’d be there for five minutes and not be able to do anymore [due to the pain].
“I’ve literally done every single diet you could possibly think of – all the shakes, everything. I was doing weights at the gym to try and change things up a bit.
“It was really frustrating when I wasn’t getting results because I was doing everything right.
“It’s painful, every single day. Every single day is just awful. Even just walking up the stairs or downstairs I could cry it’s that painful.
“I’ve got painkillers prescribed to me by the GP just to take the edge off a little bit but I’m also having to have sleeping tablets at night now because I just can’t focus.
“The pain and uncomfortableness all the time makes it so hard to switch off and think about anything else.
“I can’t remember the last time I hung out with my friends because I just don’t want to go out. It’s changed everything for me.”
The abnormal fat buildup is distributed across Clodagh’s arms and below her waist, including buttocks, thighs and legs.
I can’t remember the last time I hung out with my friends because I just don’t want to go out. It’s changed everything for me
Characteristic of the condition, the fat creates an ‘overhang’ on her ankles and wrists, where fat is not distributed.
At first, doctors allegedly dismissed her weight gain as part of polycystic ovary syndrome (PCOS) in 2017, but medication didn’t stop the fat gain and the condition gradually got worse and worse.
Clodagh claims doctors said they didn’t believe her and insisted she was secretly eating unhealthy food or had a history of obesity in her family – both of which she denied.
Clodagh said: “I went to the doctor about it and they made me go and see a dietitian because they just thought I was overweight and I didn’t want to admit it, even though I was telling them I shouldn’t be overweight. It was really frustrating.
“A few of the doctors made really unprofessional comments about it as well. One said ‘you need to be honest about it, do you just like having a few pizzas?’I was fuming.
“I was going to my doctors so they would tell me what was wrong and for them to try and make me out to be this horrible, lazy overweight person when I was doing everything I could possibly do to diet and lose weight. It’s really, really upsetting.”
Suzanne started doing her own research and by chance got in touch with another lipoedema sufferer and
put together a case study which she presented to Clodagh’s doctors.
After being referred to a lipoedema clinic and then a consultant, Clodagh was formally diagnosed with the incurable chronic condition.
WHAT IS LIPOEDEMA?
Lipoedema is a long-term (chronic) condition when there’s an abnormal buildup of fat cells in the legs, thighs, buttocks and sometimes in the arms. It usually affects women. The size of the limbs varies per person and the condition can worsen over time. As well as becoming enlarged, affected areas may feel soft, cold and ‘doughy’, bruise easily, ache or feel painful or tender, and small veins under the skin may break. It can lead to reduced mobility and psychological issues such as low self-esteem in the sufferer.
Suzanne said: “It’s stressful because nobody knows about the condition so it’s been hard to prove it and get it recognised.
“Seeing her go through the stress of it all has affected her daily living. She gets very distressed and her self-esteem is really low.
“She’s hidden herself away for a long time because she doesn’t want anyone to see her.
“She’s only 20 and she used to go out all the time and have lots of friends around her but she won’t go out to see them now. She can’t even dress like other 20-year-olds are dressing.
“There is a difference in Clodagh’s body week by week. It’s a heavy fat build up inside and they are solid, so the big parts of her body are solid.
“It’s not supple – you can’t press it. It’s really hard and stretches the skin to full capacity.
“She’s finding it difficult to walk now because the bigger that her legs get, the more difficult it is for her to lift her legs and walk. It’s having quite an impact on her now.
“We were told by the private consultant that she’s one of the youngest ones seen with it at such an advanced stage as well.
“There are hundreds of women with this condition, it’s such a shame. Most women are at the age of 35 or 45 before they reach the stage that my daughter is in at age 20.”
Clodagh’s GP applied for funding to pay for six complex liposuction operations on the front and back of her legs, arms and lower body, but the request was rejected by her CCG in March.
Clodagh, who works in recruitment, said: “Without raising the money or being able to get it another way it just feels like it’s going to put me in deep debt for the rest of my life.
“I’m worried about it. It’s deemed as a cosmetic procedure because it’s a form of liposuction that we need to have. The NHS don’t see a reason to fund it [for me].
“I went to see the surgeon for my consultation and she said it’s one of the worst she’s seen at my age because it’s progressing quite rapidly.
“If I don’t have the surgery, I won’t be able to walk before my 30th birthday because my legs will get that big. I’ll be in a wheelchair. That’s really hard to deal with.
“A lot of people think it’s just an excuse I’m trying to use for being overweight.
“It is quite hard to understand what it actually is but I feel like I have to explain myself to people because I don’t want them to just think I’m overweight and not doing anything about it. I have to explain myself all the time.
“It’s like if someone has hit you and you have that throbbing on your skin, it’s like that constantly all over. It’s like my whole body is a big bruise. It’s that sort of pain – I’m really tender.
“Even if I bump into something or rub my leg it’s painful because it’s that sensitive.
“Having these surgeries means everything to me. People ask me if I’m nervous or worried about it, and I’m just not. I just need it to happen.
“I’m struggling to cope with it at the moment, so for it to be as soon as it can, that’s the only thing I’ve got keeping me going to be honest.”
A spokesperson for Sandwell and West Birmingham CCG said: “We understand the difficulties of living with Lipoedema but cannot comment on individual cases.
“All Individual Funding Requests have to be reviewed against the same criteria to ensure patients are treated fairly and equitably.
“The CCG is currently working with Birmingham and Solihull CCG to develop our clinical treatment policies, including a draft policy on Liposuction for Lipoedema.
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“There will be a consultation period and members of the public, professionals and providers will have the opportunity to comment on our commissioning approach.”
You can donate to Clodagh’s fund here.
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