Perfect on the outside, struggling to breath on the inside - Living with Cystic Fibrosis.

Ireland has the highest rate of cystic fibrosis in the world with 1 in 19 carrying the altered gene. 

Kelsey Power Nolan from Co. Carlow speaks about how cystic fibrosis impacts her and her family’s life. Kelsey’s 12 year old brother Cody, also has CF and both are admitted to separate hospitals on a regular basis. Kelsey opens up about her genetic disease, bullying at school, a near death experience and her reaction to the Orkambi news. 

Health Minster Simon Harris also recently announced that he has secured a long term commitment from the Cabinet to fund the Orkambi and Kalydeco drugs and future medication for cystic fibrosis patients.

While the cost to the State of Orkambi is commercially sensitive, it is understood it will cost over hundreds of millions euro over the next ten years which will see a bulk of the HSE’s budget go towards the drugs.

There is also a commitment to provide access to other treatments as they become available.

According to clinical nurse specialist for CF patients at University Hospital Limerick, Peig Harnett, approximately 26 adults over the age of 18 will be provided Orkambi at the University Hospital Limerick and another 20 pediatrics will be treated with Kalydeco in the coming weeks.

Speaking about the drugs Ms Harnett stated that the drugs should reduce hospital admissions and believes there are better drugs to come in the coming years to enhance the lives of CF sufferers.

* This story and video were developed as part of an ongoing collaboration between the Irish Examiner and the Univeristy of Limerick.

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