Wellington lung disease sufferer quits job as part of awareness mission (From This is The West Country)
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Wellington lung disease sufferer quits job as part of awareness mission
A WELLINGTON woman with one of the world’s rarest diseases is retiring early to help raise awareness of the condition.
Alex McDonald, who has an incurable degenerative lung disease, is quitting her job as the DVLA’s area manager in December.
She wants to let people know about lymphangioleiomyomatosis (LAM), which causes cysts to form in the lungs and affects just 200 UK women.
For many LAM patients their only chance is a risky lung transplant.
Alex, 51, said: “When I was diagnosed, it was really hard to take in – I’d never even heard of LAM.
“All I was offered for support were a couple of fact sheets off the internet and an appointment six months later.
“The printouts said the average life expectancy is two to eight years, maybe another five with a transplant.
“I was absolutely devastated and couldn’t get my head around the fact there was no treatment.”
She found support from the charity LAM Action, which provides assistance for patients and funds research into the disease.
Alex added: “They gave me reassurance and all the information I needed and introduced me to other patients.
“The disease is so rare it’s not as though there are other local patients in the same situation I could just go and chat with.”
She was referred to the UK’s leading specialist, Prof Simon Johnson, at the National Centre for LAM, Nottingham, which made a huge difference.
Alex said: “I’m now well-informed, have regular tests and scans, which really helps psychologically, and I’m able to cope with living with LAM much better.”
Alex, who like many LAM patients has a benign renal tumour which can bleed, says her condition is currently stable.
“My lung function is reasonably well-preserved, though there’s a high risk of lung collapse, infection and respiratory failure,” she said.
“I used to go running but that’s difficult now, however riding and caring for my horses is enough to keep me fit.
“LAM restricts my ability to do physical activities as my oxygen uptake is reduced, so I become tired and struggle to catch my breath at times.”
Alex, who hopes to act as an ambassador for LAM Action, said: “Without the crucial support and expert advice of fellow ‘Lammies’ I don’t know how I’d have managed.”
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