Lifting my feet and pain is like that doesn’t go away. But I’ve will not have to suffer like me
Mother and daughter are determined to help others living with lipoedema
Teenager Grace Nicolson should not have to endure the same cruel comments about her weight that her mum grew up with.
The brave teen has been diagnosed early with lipoedema, a condition which causes an abnormal build-up of fat mainly in the lower body.
The 13-year- old schoolgirl, from the Isle of Skye, only found out she was suf fering af ter doctors f inal ly diagnosed her mother Lorna Taggart following decades of pain.
It’s the same debilitating disorder rarely talked about that also affects Love Island star Shaughna Phillips. Lorna, 41, carries almost six stones of excess fat around her legs and hips and sufferers, who are mostly women, are characterised by their small waists and upper body. Without specialist surgery, she fears she will be in a wheelchair within 10 years.
Mum-of-three Lorna said: “It’s not easy to describe what having lipoedema is like.
“I feel like I have heavy sandbags on my legs. Lifting my feet can be such a struggle.
“The pain is like a toothache or electricity running all down my legs that doesn’t go away.
“Al l my life I had classic symptoms of lipoedema and made repeated trips to doctors but I was only diagnosed three years ago af ter a chance conversation with a friend who was a nurse and knew about the condition.
“I feel like my diagnosis came too late for me – the condition had already progressed before I knew what may or may not have acted as different triggers to weight gain.
“But at least my experience can help Grace, and by speaking out we hope to raise awareness and help others too.”
Grace said: “It was hard to be told I’ve got the same condition that’s affected my mum so much but I’m lucky because I’ve had such an early diagnosis.
“My mum knew what early symptoms of lipoedema to look out for, and I now know what I can do to hopefully stop it progressing to the same stage as it has for my mum.
“Now I know I have the earliest stages of lipoedema, there are foods I should avoid to help stop the build-up of fat, and different exercises I can do that will help me.
“When I first started to tell my friends about the condition, some of them didn’t believe me because they had never heard of it.
“Everyone should know about lipoedema.”
Teacher Lorna was a young girl when she first experienced cruel comments about her size. She couldn’t understand her unusual body shape – a slim waist, hands and feet, yet large hips and legs.
She said: “By the age of 13, I was starving myself in a desperate bid to try to lose weight. I was living on sugar-free chewing gum and would eat one apple about every three days.
“As I grew older – and par ticularly af ter going through the hormonal changes of puberty and then my three pregnancies – the fat on my body continued to build but in a way classic to lipoedema.
“My legs and hips were big but for years I had a tiny waist and no fat on other parts of my body.
“I remember going shopping for my wedding ring and the lower half of my body was perhaps a size 16 or 18 but my fingers were so slim I could only fit the smallest ring in the shop.”
After being diagnosed in 2017, Lorna joined the support group Talk Lipoedema.
She was also referred to Alex Munnoch, a surgeon and lipoedema specialist, who advised her the only way to remove the excess fat that had accumulated was through liposuction surgery.
Lorna, whose waist until recently was always 20 inches smaller than her hips, said: “I’d never seen anyone else with legs like mine because everyone with lipoedema keeps them hidden – but on being diagnosed I realised I wasn’t alone.
“I learned lipoedema can run in families too, which made sense.
“My granny was the same shape as me and had to use a wheelchair in later life. She used to say she had hips like a horse.”
In summer 2020 Lorna was supposed to undergo the first of three separate surgeries to remove the excess fat from her legs and hips but the operations were indefinitely postponed as a result of the coronavirus pandemic.
Ninewells Hospital in Dundee is the only hospital in the UK that offers the procedure on the NHS.
Lorna, who measures size 26 below the waist but just size 18 on top, said: “I was approved to have the operation on the NHS but most people are not so lucky.
“Liposuction is classed as a cosmetic
procedure but if you have lipoedema like mine then you have no alternative to surgery.
“The operation is to remove the diseased tissue, take away the pain and hopefully stop me ending up in a wheelchair.
“I can’t understand why that would be considered cosmetic.”
Lorna, who is married to husband Ally, 40, also has daughters Rona, 21, and four-year-old Ealasaid.
She and Grace now want to do all they can to raise awareness of lipoedema, particularly among young girls and the medical profession.
They also want to see funding more readily available for patients with severe lipoedema to receive liposuction on the NHS.
Lorna added: “Society is prejudiced against fat people. It’s the last -ism. But obesity is not as clear-cut as fitness fanatics would have us believe.
Obesity is not as clearcut as fitness fanatics would have us believe
“If you have lipoedema, it’s not because you’ve been over- eating, you’re not lazy and, in fact, there is nothing you have done to make you the shape you are.
“What you need is specialised support and advice to help slow the progression of the condition and, if you need surgery, then that should be available on the NHS.”
Lorna’s brother, broadcaster John McDiarmid, has now made a documentary mapping his sister’s lipoedema journey since her diagnosis.
Lipoedema – Sgeulachd Lorna/ Lipoedema – Lorna’s Story is on BBC ALBA on Tuesday at 9pm.