This morning as I was driving and listening to the Ed Myers show on 95fm ,it was discussing the plight of those with Cystic Fibrosis..more below (Cystic Fibrosis (also called mucoviscidosis) is Ireland’s most common life-threatening inherited disease. Approximately 1 in 19 people are carriers of the CF gene and where two carriers parent a child together, there is a 1 in 4 chance of the baby being born with Cystic Fibrosis. CF affects the glands, damaging many organs including the lungs, the pancreas, the digestive tract and the reproductive system. It causes a thick sticky mucus to be produced, blocking the bronchial tubes and preventing the body’s natural enzymes from digesting food. Cystic Fibrosis primarily affects the lungs and the digestive system. A build up of mucus can make it difficult to clear bacteria and leads to cycles of lung infections and inflammation, which can eventually lead to damage of the lungs.CF can also make it difficult to digest and absorb adequate nutrients from food. Mucus blocks the duct of the pancreas, preventing enzymes from reaching the intestines to digest food.As a result, persons with CF must consume artificial enzymes with food, to help them absorb adequate nutrition from their food. They must also follow a demanding daily routine of physical therapy to keep the lungs free of congestion and infection.Additional organ systems involved are the reproductive tract and the sweat glands. Other organ systems may be involved to leser degrees.The result is that people with CF are prone to constant chest infections and malnutrition. However as therapeutic options have expanded over the last decade, significant advances have been achieved in both life expectancy and quality of life.)Your life expectancy is short early 20’s ,Dr Michael Mahony who is a Consultant Paediatrician for the Mid Western Regional Experience has a vast wealth of experience in Cystic Fibrosis states that the life expectancy is increasing due to medical advances but funding has still to catch on.(JPMcmanus has donated over 100000 in funding towards it !)He states CF is a fatal disease but the period of survival is been extended,perhaps with proper funding we could have more like Mr.Mahony to investigate this fatal disease further.
The 95Fm on Cystic Fibrosis a return to I was quite moved by some of the comments ,especially the parent who had lost a loved one at such a young age ,she was very brave and full of praise for all the staff and the Doctors in the Mid West Regional Hospital who did so much ,Through her pain and grief she still finds the time to return to thank them 2 years later . The facilities in the Limerick Hospital in dealing with Cystic Fibrosis are better than in Dublin it was reiterated during the show, considering there is such a shortage of staff there, who seem to be off their feet constantly due to work overload and staff shortages.
Interestingly an anonymous call was made to the 95fm by an employee of the HSE stating it would be so much better if the HSE had not placed an embargo on the hiring of staff ,patient care is been neglected at a cost with lives.
Accountability in the HSE is non –existent for the millions squandered while this poor woman above has all but a grave to visit and a memory of a life short lived. There seems to be no end in sight to the never ending problems that the staff on the ground have to deal with on a daily basis while Admin in the HSE recommends exhorbant pay rises for itself to the detriment of the PEOPLE ‘S LIVES of all ages.
This week is Cystic Fibrosis week to raise awareness, please see the link below to the Late Late Show from last Friday Night where it was discussed,
Click to view video (RealPlayer required)
The Cystic Fibrosis Website.
To answer the Question ,I did not know a lot about CF ,I do now .
