Working Life: Rory Tallon, CF Patient Advocate with Cystic Fibrosis Ireland
A day in the working life of Rory Tallon, CF Patient Advocate with Cystic Fibrosis Ireland (CFI).
Mornings are busy.
Having CF means adhering to a strict regime: chest clearance physiotherapy, inhalers, vitamins, nebulisers and medicines. I also have diabetes, so I must manage my blood sugar.
I get the kids up. Florence, five, attends the local Gaelscoil in Tyrrelstown and Áine, four, goes to naíonra. My wife Sarah leaves early so I do the drop-offs.
9am
Back at home, I read emails and answer queries from people with CF and families. Many are travel-related. It can be hard to get travel insurance but it’s important to have a comprehensive policy when travelling abroad, as well as having a European Health Insurance Card. We advise people on options and practical travel tips such as bringing medicines and appliances as carry-on luggage when flying.
I follow-up with a parent asking how to ensure their child takes supplemental enzymes with meals at school. Most people with CF need to take enzymes with meals to aid digestion. Older children can get self-conscious about this, and parents ring looking for advice.
I respond to a query about counselling. People with CF have access to a psychologist at hospital CF centres but sometimes they would like external support and we provide grants for this.
I head to our Rathmines office. We did a survey on independent living with CF and are finalising the report. It examined aspects of living from education, employment, housing and social welfare supports to travel and mobility requirements. People with CF don’t qualify for motoring assistance even though public transport poses a risk of cross-infection, can be too difficult to access or unavailable in a locality. PWCF find it impossible to get life assurance when getting a mortgage. Many adult PWCF live their lives at home with parents.
I meet the fundraising team to discuss the logistics of our national awareness day, 65 Roses Day, on April 13. People can support us by buying a purple rose for €2 in participating shopping centres and Spar stores or donating online.
I head home. Downtime includes a running class at the National Indoor Arena. It’s very important with CF to keep your lungs working and your body as strong and fit as you are able.
