FAMILIES AFFECTED by cystic fibrosis (CF) will urge the Government to improve services for people with CF at a conference this weekend.
They include the parents of Kilkenny girl Alex Prendergast, who spent the fourth month of her life under an oxygen tent before doctors diagnosed her as having cystic fibrosis.
At the time Kevin and Karen Prendergast had no idea about the condition. Today Ms Prendergast says: “CF is all we know.”
Alex, who is now an active eight year old, requires daily medical and physical treatment in order to maintain a “normal” standard of living.
“From the minute Alex wakes up, CF is with us as she has a huge appetite because people with CF burn a greater amount of calories due to heavy breathing during the night,” said Ms Prendergast.
Cystic fibrosis is a genetic disease that causes respiratory and digestive problems and can lead to osteoporosis, diabetes and other complications.
“Since Alex was diagnosed, we basically had to build our life around CF,” said Ms Prendergast. This weekend she is helping to organise the Cystic Fibrosis Association of Ireland’s national conference in Kilkenny.
“Things have definitely improved for people with CF since Alex was born, but there are still major issues when it comes to dealing with risk of infection in hospitals for CF patients,” said Ms Prendergast.
Alex attends Ardkeen Hospital in Waterford every three months for check-ups and scans on her liver and kidneys.
“Despite years of lobbying, isolation rooms with en suite toilet facilities and washrooms have not been made available for people with CF in the southeast,” Ms Prendergast said.
The issue of “hospital upgrades” is high on the agenda for the conference, which was opened last night by Minister of State for Equality Mary White.
Carmel Delaney, who lost her first daughter, Susan aged 14, to CF-related illnesses and has a 20-year old son with the disease, is angered at the inaction of successive governments in providing adequate facilities for CF patients in the southeast. “It’s very sad to think our children can go into a hospital for treatment and come out the other end much sicker with acquired infections,” she said.
The conference runs at Hotel Kilkenny until tomorrow.