The importance of raising awareness of cystic fibrosis: Lizzy's CF Week story

I started writing a blog about our family and our experience of living with cystic fibrosis when my son was about nine, the main purpose of which was to raise awareness of CF and the importance of organ donation. At that time, Isaac was colonised with Pseudomonas, suffering regularly from Distal Obstructive Intestinal Syndrome (DIOS), enduring many courses of IV antibiotics, and having to face big decisions about his care, such as whether to get a portacath.  

 In the time since we received Isaac’s diagnosis, we’d been asked a thousand questions. All I am sure, from genuine interest and compassion, but not always helpful.  

 Is that the one where you bash them? (Yes, partly). When did he get/catch CF? (Um, it’s genetic). Does CF affect his cognitive ability? (No). Does CF only affect his lungs? (Sadly, no, it greatly impacts his digestive system, sinuses and liver too). Do his sisters have CF? (No, we had pre-implantation genetic diagnosis and IVF to ensure that they would not suffer also). Why so many tablets? (His pancreatic enzymes, which allow him to digest fats and proteins that he cannot otherwise, might be up to 50 capsules a day alone). So much salt! (He needs it). Why can he not have a lung transplant now? (Because he doesn’t need one yet, and when he does, it’s trading one difficult condition for another). Won’t he become resistant to antibiotics if he takes them every day? (He won’t, but the bacteria which camp out in his precious lungs might, yes). Will he get better soon? (We hope so, but CF is a progressive, life-limiting disease without important breakthroughs in drugs and care that might change the course of the condition, which for Isaac, are not there yet).  

 Greater understanding of his disease, which is largely invisible, helps both Isaac and our family hugely. Knowing to stay away when you have a cold to avoid passing this on to him. To not stare or fuss over him when he’s having a coughing fit. That the ‘you need to pack in the smoking, mate’ jokes are REALLY. NOT. FUNNY. That his poor attendance at school or college is never his fault. That sinus pain really can be debilitating. Understanding when we don’t always reply to messages asking how he is, but that we always appreciate people asking.  

Long before COVID-19, masks in hospital and good hand hygiene were our norm. In equal parts, it’s difficult when Isaac is coughing in public and people stare and run a mile thinking he is the contagious one, but also when people are coughing around him, and we need to do the same. When he was small, on many occasions I needed to explain that he has CF when people look horrified that I could possibly have brought him out in public coughing as he was.  

 Cystic fibrosis is a breathing disability that requires a heavy burden of care each and every day, to stay as well as possible. For us, we are still waiting for a drug that will treat the underlying cause of his disease, rather than only its symptoms. There is no day off from the hours of CF treatments, but we still laugh, dance and find joy in all the wonderful aspects of life with our amazing boy and feel greatly optimistic that current research will award him a much better quality of life in future.  

Greater awareness also helps raise crucial funds towards this research, and our fundraising each year for Cystic Fibrosis Trust is so important to us, making us feel like we are contributing to a healthier future for Isaac and other people with CF.  

Open conversations bring change. We’re #liftingthelimits this CF Week to increase understanding and show what life with CF is really like. Download our social media graphics to help raise awareness. Remember to tag us @cftrustuk and use the hashtag #CFWeek to join the conversation. 

Starting a conversation with friends, family or colleagues about CF can raise vital awareness. If you’re struggling to find the right words, our Talking Toolkit has some tips that might help.  

You can read Lizzy’s blog at My Merry Moly World.

Cystic fibrosis (CF) is a genetic condition which causes sticky mucus to build up in the lungs and digestive system. It affects more than 10,800 people in the UK. One in 25 of us carries the faulty gene that causes it, usually without knowing. 

Since 1964, we've supported people with cystic fibrosis to live longer, healthier lives - and we won’t stop until everyone can live without limits imposed by CF.