Cystic Fibrosis sufferer 'fighting for her life' as she waits for specialist drug

A Newtownabbey woman with cystic fibrosis is pleading with health chiefs to allow her immediate access to a specialist drug which could extend her life.

28-year-old Nicole Adams, who is seriously ill in hospital, is fighting for her life with every breath she takes as her lungs are only functioning at 13 percent.

Nicole with boyfriend Ciaran who is leading the campaign to help her.

Nicole’s boyfriend Ciaran McVarnock believes she is at “death’s door”, and says they are pinning their hopes on new triple therapy drug, Trikafta, which is currently available in America, but is not yet licensed here in Northern Ireland.

The young woman once owned her own hairdressing salon, but her health deteriorated and even small tasks became too much so she was left with no choice but to give the business up.

Nicole was previously granted Orkambi before is was made available in Northern Ireland on compassionate grounds but she had to stop taking it when she developed side effects.

In a statement the Health and Social Care Trust said arrangements have recently been put in place to allow patients in Northern Ireland to have access to three medicines Kalydeco, Orkambi and Symkevi following a clinical assessment and without reference to the HSC Board.

“Use of medicines on a compassionate basis may be undertaken following agreement between the patient's consultant and a pharmaceutical company.

Health and Social Care Trust

Cystic fibrosis is an inherited condition that causes sticky mucus to build up in the lungs and digestive system. This causes lung infections and problems with digesting food.

In the UK, most cases of cystic fibrosis are picked up at birth using the newborn screening heel prick test.

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