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Irish teenager Claire becomes the first person in the country to beat rare blood disorder

A 14-year-old girl who suffers from a rare blood disorder - which costs the State €437,000 a year per person in drugs bills - has been cured with a bone marrow transplant at a quarter of the cost.

Claire McNamara (14) underwent a transplant last November in a state-of-the-art stem cell unit at Our Lady's Children's Hospital in Crumlin at a cost of €85,000.

She had been diagnosed with the life-threatening disease Paroxysmal Nocturnal Haemoglobinuria (PNH), which made headlines earlier this month as the Health Service Executive's Tony O'Brien warned the high cost of paying for drugs to treat it would impact on the funding of other services.

After a campaign by sufferers, the HSE sanctioned the use of the drug Eculizumab, also known as Soliris, to treat it at a cost of €437,000 a year.

Professor Owen Smith, consultant in childhood cancer at the hospital and Regius Professor of Physics at Trinity, who treated Claire, said stem cell transplantation was the only cure for the condition, but not everybody with PNH was a suitable candidate. "This is a first for Ireland in haemotology; Claire is the first to be transplanted here. When you see PNH in children, the longer they live with it, the greater the chance they will die from it," Prof Smith said.

PNH causes the destruction of the blood cells, leading to anaemia, fatigue, muscle pains and a high risk of blood clots and kidney failure.


Claire McNamara (14) who has beaten PNH. Photo:  Ciara Wilkinson.

Claire McNamara (14) who has beaten PNH. Photo: Ciara Wilkinson.


Claire pictured with One Direction's Niall Horan

Claire, who was diagnosed after being hit by a bout of tiredness and bruising, had her transplant on November 25 and got home to Oughterard, Co Galway on Christmas Eve.

"Now I feel much better, I have energy," she said. She is now looking forward to returning to school and seeing her friends and in the future is hoping to become a paediatric nurse.

Irish Independent