A north-east woman claims she has “hit a brick wall” in her fight against a chronic genetic condition that claimed the lives of her mother and grandmother.
Donna Adams, from Ellon, is awaiting a consultation with a surgeon which she hopes can lead to treatment for her inherited illness, lipoedema.
She was so desperate to see the UK’s only lipoedema surgeon, Dr Alex Munnoch in Dundee, she gave up her marriage and moved back to Scotland from England.
However, she has been waiting for a year to hear from NHS Grampian on funding her consultation with the Ninewells medic.
Last month, NHS Grampian said it would not fund her treatment and has asked for more information about treatment in NHS Tayside.
There are 268,000 Scottish women who suffer from lipoedema, which causes an abnormal build-up of fat in the body.
After watching helplessly as her mum died, bedridden at 45, without even knowing she had the condition, Donna was herself diagnosed two years ago.
Her grandmother Cissie also suffered its life-limiting side effects.
The former tax inspector told The Sunday Post: “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 that by the time I was 50, I’d be in a wheelchair.”
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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.”
Donna played sports and ran for miles every day, as well as constantly dieting, without realising her body size was outside her control.
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.”
However, NHS Grampian has failed to satisfy her calls for treatment.
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.”
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.”
Dr Munnoch is the only UK doctor offering the surgical help that is practised in Europe to ease the strain on lipoedema patients.
It is understood he only has operating theatre capacity to see around two dozen women a year.