Cystic Fibrosis

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Summary:

Cystic fibrosis is a multi-organ disease that primarily affects the lungs and digestive system. A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that:

Clogs the lungs and leads to life-threatening lung infections;
Obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.

Statistics:

Statistics

There are approximately 1,300 children and adults in Ireland living with the condition.
About 25 new cases of cystic fibrosis in Ireland are diagnosed each year.
Because of new born screening, most babies with CF should now be diagnosed quickly
Around 55% of the CF patient population in Ireland is aged 18 or older.
The predicted median age of survival for a person with CF is in the early and mid-30’s in Ireland.
For the most up-to-date statistics on CF in Ireland please see the CF Registry of Ireland Report

https://www.cfireland.ie/about-cf/what-is-cystic-fibrosis [1]

Charities:

Charitable Organizations	Location	Est.	Services
Cystic Fibrosis Ireland	Dublin	1963	Advocacy, CF centres and online wellness centres

Not-Profit Groups:

Information:

What Is (CF) Cystic Fibrosis?

Cystic fibrosis is an inherited condition that primarily affects the lungs and digestive system.

It is important to note that if you are reading this for the first time or if you have just been told that your child has cystic fibrosis (CF) that you know that there have been very good advances in CF care in recent years. These advances include exciting new drug therapies that treat the underlying cause of disease; improved CF centres, including those funded by or through the advocacy of CFI and good support networks for parents and people with CF. We are here to help you and you will be looked after by a multi-disciplinary team in your CF centre.

Cystic fibrosis is a multi-organ disease that primarily affects the lungs and digestive system. A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that:

Clogs the lungs and leads to life-threatening lung infections;
Obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.

The impact of CF can vary from one person to another. There are some people with CF who live until their teens and there are others that live in to their 50’s. Ireland has among some of the most severe strains of CF and also has the highest incidence (per head of population) of CF in the world, with three times the rate of the United States and the rest of the European Union. However it is important that we now have a network of centres of expertise in place and dedicated multi-disciplinary teams lead by specialised CF consultants.

Symptoms of cystic fibrosis

People with CF can have a variety of symptoms, including:

Very salty-tasting skin
Persistent coughing, at times with phlegm;
Frequent lung infections;
Wheezing or shortness of breath;
Poor growth/weight gain in spite of a good appetite; and
Frequent greasy, bulky stools or difficulty in bowel movements.

Advances in Care and Therapies in Ireland

There are specialised CF centres of expertise in Ireland
Each centre has a multidisciplinary team, including for example a consultant, CF nurse, Dietitian and physiotherapist
There are new exciting therapies being developed that will further improve survival ages and quality of life in Ireland

https://www.cfireland.ie/about-cf/what-is-cystic-fibrosis [1]