Lipoedema cost Donna Adams everything, her marriage, her chance of becoming a mum, her career and, sometimes she fears, almost her mind.
After watching helplessly as her mum died, bedridden at 45, without even knowing she had the little-known medical condition which affects over quarter of a million Scots women, Donna was herself diagnosed two years ago.
As a child, Donna watched her grandmother Cissie also suffer the life-limiting side effects of the condition and the former tax inspector, originally from Ellon, Aberdeenshire, said: “Lipoedema destroyed my gran and killed my mum, but not before she had suffered years of pain, shame and hopelessness.
“I was so determined to break the cycle of destruction this condition brings to the lives it touches, I was prepared to give up everything to fight it because I could see by the time I was 50, I’d be in a wheelchair.”
So desperate was she to see the UK’s only lipoedema surgeon, she moved back to Scotland from England, but her attempt to fight against the inherited condition which few understand but 268,000 Scottish women suffer from, has, in her words “hit a brick wall”.
A year has passed since her GP requested NHS Grampian refer her to the only surgeon who can help, Dundee-based Alex Munnoch.
Donna, 46, said: “If someone had a heart disease, they wouldn’t be denied treatment. Lipoedema can be every bit as destructive as any of the awful chronic conditions which get treated without question.
“I watched my poor grandmother crying in pain from swollen legs elevated most of the day encased in the same thick compression stockings that I have to wear despite them being so hot and uncomfortable. And my mum became so ill with lipoedema, she was eventually bedridden. She died after decades of being told she was too fat, taking water tablets and blaming herself for an illness she could never have controlled.”
Terrified she would follow her mum’s path, Donna played all kinds of sports and ran for miles every day.
She said:” I’d diet for years on end, not realising my body size was outwith my control because of lipoedema. I was a size 10 on top. But my bottom half was a size 20, eventually growing to a size 26 no matter how hard I dieted. My greatest fear was having obesity written on my death certificate like mum.”
Cruelly, lipoedema cost Donna the chance to become a mum. She said: “I was told my BMI was too high to get fertility treatment and in a final act of ignominy, it was also too high for me to adopt a child. I was just a size 14 on top, but my BMI was too high because of the weight of my swollen legs because of lipoedema, not because I was sitting eating pizza and chocolate all day. I could have lived on lettuce and still looked the same.”
Everything changed two years ago when Donna met a specialist who worked for a lipoedema charity.
She said: “The woman sat me down and asked all about my life and my gran and mum. She suspected we all had lipoedema. She told me mum probably progressed from lipoedema to lymphodema, to cellulitis then sepsis. Mum died without getting a diagnosis.”
A London specialist confirmed Donna had lipoedema. She said: “There was only one surgeon in the UK offering patients surgery and he was back home in Scotland. My husband refused to move, so I left everything behind in Croydon, and came to Scotland.”
Donna found a GP in Aberdeen willing to research lipoedema, and for the last year has been waiting to hear from NHS Grampian on funding her consultation with Dr Alex Munnoch at Ninewells, Dundee.
Last month, Grampian said it would not fund her treatment.
NHS Grampian said the health board has now asked for more information about treatment in NHS Tayside. It said: “We understand this will be frustrating for Ms Adams and we are keen to give her a definite decision as soon as practical.”
But Donna said: “I’ve waited almost a year for this pathetic response and all the while I’m in constant pain, unable to work and my condition is getting worse. If I’m made to wait much longer I fear I will end up like my poor mother did.”
Labour’s shadow health secretary Monica Lennon said: “Lipoedema can take so much from women and it’s a health scandal that the medical profession has learned so little about it. I’ve made a personal plea to Health Secretary Jeane Freeman to work with me to make sure lipoedema women begin to get the level of care they need and deserve.”
Specialist: Funding is needed for surgery to give sufferers better quality of life
NHS Tayside surgeon Alex Munnoch is the only UK doctor offering the surgical help that is practised in Europe to ease the strain on lipoedema patients and give them their lives back.
But he only has operating theatre capacity for around two dozen women a year, draining on average almost five litres of unwanted fat weighing around five kilos from each leg.
He says he sees hundreds of women who have never been diagnosed, and very few get funding for the liposuction surgery which can ease their pain.
He said: “Surgery can offer a significant improvement in the quality of these patients’ lives.
“There is a need for more awareness of this condition. It is a medical condition – it is not simply obesity.”
The respected specialist is calling for greater resources to be made available across the UK.
He said: “There does need to be adequately resourced facilities throughout the country for the diagnosis of lipoedema and to be able to give patients appropriate advice.”