Alice Ward says it's frustrating that health system is not doing all it can to support her when she is doing all she can to beat cystic fibrosis.
Cystic Fibrosis Ireland and local North Dublin charity, Cystic Fibrosis Hopesource, are still waiting for a dedicated 20-bed CF unit at Beaumont Hospital.
Ms Ward, the spokeswoman for CF Hopesource, said the unit was included in the Programme for Government in 2016.
The cost of the new unit is €11m and Cystic Fibrosis Ireland and CF Hopesource are committed to raising €1m towards the cost of the project.
Ms Ward, 23, who is from Dublin said the hospital rooms for CF patients are far from ideal and are extremely old.
She is careful to take her medications, avoid infections and try to keep fit. “So, it can be frustrating when I am doing all that I can to beat CF, that the health system isn’t doing all it can to support me,” she said.
She became quite ill in 2016 and had to attend Beaumont's emergency department but went home when a bed could not be found. Ten days later she was admitted to the hospital after her health deteriorated further and she spent the next two weeks trying to recover.
“Ireland has one of the highest rates of CF in the world so there should be services in place,” she said on RTÉ radio yesterday.
“How are CF patients in Beaumont supposed to get proper treatment when there are seven beds for 180 patients?” she asked.
Minister for Disabilities, Finian McGrath, said he expects the CF unit at Beaumont to proceed to planning before the end of this month. He tweeted: “This unit is a priority of mine which I included in the Programme for Government."
Chief executive of CF Ireland, Philip Watt, said the existing seven rooms in the hospital are barely fit-for-purpose and have become run-down through overuse.