The Courier & Advertiser (Fife Edition)
Donna denied potentially life-saving op
Ellon woman desperate for help to ease condition which killed her mother
A woman claims she has “hit a brick wall” in her fight against a chronic genetic condition which claimed the lives of her mother and grandmother.
Donna Adams, from Ellon, is awaiting a consultation with a Dundee 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 – Dundee’s Alex Munnoch – 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 about funding for her consultation with the Ninewells medic.
Last month, NHS Grampian said it would not pay for her treatment and has asked for more information about treatment in NHS Tayside.
Some 268,000 Scottish women suffer 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 that 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 by the time I was 50, I’d be in a wheelchair.”
Donna, 46, played sports and ran for miles every day, as well as constantly dieting, without realising her body size was outside her control.
A specialist then told her the truth about her condition.
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.”
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.”
Alex Munnoch is the only UK specialist offering a surgical procedure that is practised in Europe to ease the strain on lipoedema patients.