A 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 as the DVLA’s area manager in December.
She wants to let people know about lymphangioleiomyomatosis, which causes cysts in the lungs and affects just 200 UK women, and for many their only chance is a risky lung transplant.
Alex, 51, of Wellington, 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 factsheets off the internet and an appointment six months later.
“The factsheets said the average life expectancy is two to eight years – maybe another five with a transplant.
“I was devastated and couldn’t get my head around the fact that there was no treatment.”
Alex found support from the charity LAM Action, which helps patients and funds research.
She said: “They gave me reassurance and all the information I needed, and introduced me to other patients.
“The disease is so rare there aren’t other local patients in the same situation I could chat with.”
Alex was referred to leading UK specialist Prof Simon Johnson at the National Centre for LAM, which made a huge difference.
She 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.”
Like many LAM patients, Alex has a benign renal tumour which can bleed, but she says her condition is currently stable.
“My lung function is reasonably well-preserved, but there’s a high risk of lung collapse, infection and respiratory failure,” she said.
“I used to go running, but that’s difficult now, but 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 hopes to act as an ambassador for LAM Action and said: “Without the crucial support and expert advice of fellow ‘Lammies’ I don’t know how I’d have managed.”