THEY live a mile from each other on Glasgow's outskirts and suffer the same rare disease – but their lives are veering down opposite paths.
Lesley Loeliger, of Newton Mearns, is taking the first treatment licensed for patients with PNH. She is no longer housebound with exhaustion or haunted by the prospect of dying while her children are at school.
Fellow sufferer William Devine, also from Newton Mearns, has just been told by NHS Greater Glasgow and Clyde it will not pay for him to receive the drug. He is so tired he spends entire days in bed, he struggles to walk more than 60 yards and his kidneys are failing because of the illness.
Mrs Loeliger, 43, said: “I genuinely felt heartbroken talking to him because that used to be me.” She was diagnosed with PNH at the end of 2005 after more than a year of utter exhaustion.
She was initially given the traditional treatment, blood transfusions every four to eight weeks, but her body started developing antibodies against the donated blood. Even with the transfusions she said the quality of her life was “rubbish”.
“The physical symptoms were terrible,” she adds.
“My husband was working all day and coming in at night and having to do everything, even to the extent of having to carry me upstairs and put me to bed. It was like I was not part of the family any more.”
The couple found people to take their children to school and their church delivered evening meals several times a week. Doctors applied for Mrs Loeliger to receive eculizumab. It was approved in 2008 and six months after she began the regular injections, her life changed. “I woke up one morning and thought, ‘I feel strangely different’,” she says. “I started to do more.” Today she is able to take Amy, 10, and Andrew, 13, to school, cook dinner for everyone and go on family outings.
But Mr Devine, 68, is not so fortunate. He gives an example of his daily exhaustion, describing how he woke and made tea at what he thought was 7.10am only to realise the sky was darkening outside.
“It is a very debilitating illness and it is hard to describe,” says the retired draughtsman. He was diagnosed with PNH three years ago. His son, Doug, says his dad was a sociable man but now spends more days than not housebound.
Doug also says his father has stage-four kidney failure, while a previous stroke means his risk of suffering a blood clot is high. Blood clots in the veins or arteries account for approximately 40%-67% of PNH-related deaths.
NHS GGC refused to fund Mr Devine on eculizumab, turning down the family’s appeal, which was backed by a leading clinician, earlier this month.
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