Parent's Corner

Parents Corner | Entitlement Details | New Treatments

Getting a diagnosis of Cystic Fibrosis is bloody awful! It pictures of awful things that we all see in our heads that are too upsetting to put into words, especially if there are going to be small people reading this! We as parents know its tough looking after a sick child, especially when they are still of the age where they need a lot of help from us. So the last thing we need is to be worrying about is “how are we going to pay for all of this medicine? How are we going to manage if one parent has to stop working?” As stated above, we are very fortunate to have a social worker in the unit and she does a lot of this paper work for newly diagnosed families. But for those who can’t access one as readily as we can in Limerick, the below info is a general guide to the basic entitlements available to parents of a PWCF. For further info on how these entitlements change once the child becomes an adult, see the below web links or contact your local Citizens Advice Office. A great alternative source of info is our CF Advocate Caroline Heffernan. She can be contacted through CF House in Dublin, by email This e-mail address is being protected from spambots. You need JavaScript enabled to view it or 087-9323933. Finally, CF House also have a publication called “Rights and Entitlements-A Guide for People with Cystic Fibrosis and their Families.” It contains a lot of relevant info and is not bogged down by too much medical/technical jargon.