Cystic Fibrosis: A Q&A

Is there a sense of fear or anxiousness when you want to ask someone a question about their illness/disability? In a way, I think there is. I've always felt that with my illness, Cystic Fibrosis, some may be afraid of asking me questions about my illness in case they upset me or maybe don't feel comfortable asking. Totally understandable. I mean, I think, well, I know that I sometimes get a little nervous asking someone questions of who has a chronic illness I'm not familiar with. 


However, my philosophy has always been that I would rather someone ask me the questions so I can give them the right answers, rather than them making the wrong assumptions. I am always happy to answer any questions anyone has. I'm the weird one who likes to educate people than shy away from it!

A retro letter board


So, I took to my social media platforms and asked my followers if there were any questions they had about CF. Firstly, thank you to those who did ask me questions, I really appreciated it! I had some really good and insightful questions, and here they are -

1) When did you first understand that you had Cystic Fibrosis and how did you feel about it and about your future? - Ellie (Ellie's Bows & Sparkles)


I think the first time I vividly remember that I knew I was different from everyone else was when I just started school aged 4. I would be sat with my friends and they'd just tuck into their packed lunches straight away. But then there'd be me having to take a tablet or two called Creon before eating. That's when I thought I was different from my friends. The good thing is that my friends at such a small age never treated me differently. Children are more accepting of things like that than adults at times. At such a young age, I never really thought of my future, I started to think more about that when I reached my teens. 


2) Has your CF stopped you from doing something or going somewhere? - Hannah J (HanPlans)


I've always promised myself that I would never let CF stop me from doing the things I want - to a certain extent. I would regrettably say that it has kind of stopped me from going abroad as much as I would have liked. The thing is, CF involves a lot of medication and health risks, and to travel insurance companies, we're a huge red flag in terms of travel insurance cover. So it would cost me quite a bit of money to go somewhere before the plane has left the tarmac. This is why I take a lot of staycations in the UK. It may not be abroad, but at least I'm venturing out of Newport! 

Cystic Fibrosis has never stopped me from going after the jobs I want. It's never stopped me from socialising (even when I'm under the weather) and doing other daily life tasks. I like to think I'm quite resilient in that perspective. 

A retro letter board

3) What advice would you give to parents of a nearly diagnosed CF child? - Corinne (Skinnedcartree)

Firstly - don't panic. A very, very easy thing for me to say. But back when I was diagnosed, the prognosis for me is that I wouldn't live past 18 years old. I'm turning 30 next year - and that's thanks to huge advancements in medication and treatments ie Kaftrio. A child born with CF today will have a greater chance of living a longer life. Of course, CF is a very complex illness and every one person with CF is affected by it differently. 
Secondly, start talking to other parents with CF children online and even people with CF. There's a great CF community online and we're always willing to help, so please don't feel like you're alone in this. 
Thirdly, ask as many questions as you need to. The medical team looking after your child are there for moral support as well as providing health care to your child, so don't be afraid to ask questions. They're always a phone call away. Don't feel like you're a being a bother.
Lastly, don't make your child feel like they're different. They may have CF, but they're so much more than just an illness. 

4) Have you found a community (IRL/online) of others with CF? - Claire (Claire Mac)

There is a huge Cystic Fibrosis community online! I have made some wonderful friends online through CF. There's a really supportive and loving CF community, we always got each other's backs. For those who don't know, people with CF are not advised to meet in person due to the risk of cross-infection. Cross infection means that if, for example, I met a person with CF in Costa, there is a risk we could pass on different chest bugs to each other. Which could result in the bugs creating superbugs which could be resistant to any antibiotics. 
I have seen people with CF meet each other and even have relationships with each other. I have no issue with that, but for me personally, I won't put my health or someone else's health at risk. That's just my opinion.

A retro letter board


5) What do you wish people knew/understood better about CF? - Amy (Call Me Amy)

Weirdly enough, I wrote a post similar to this question a while ago, one you can read about here. I would say that I wish people would realise it's not like asthma, it's an invisible disability and that mentally, it is a challenge for me too. 
Obviously, CF is a physical disease, but it has an impact on my mental health. I have to had to build up this resilience and inner strength to fight CF every day - something which took time and energy. Definitely something that didn't happen overnight. 


6) Can a lung transplant cure CF or is it deeper than that? - Jeannie M (Absolutely Enchanting)

To put it simply, no. A lung transplant is definitely not a cure for Cystic Fibrosis. It can prolong life and allow breathing to be easier, but that's all. A lung transplant is a huge operation, very much life-changing. It is up to the person with CF to decide whether they would like a lung transplant if/when the time comes. A lung transplant doesn't come without its risks either. You're introducing your body and immune system to two alien organs from another body, a donor's body. I wish a cure would be around, but I don't think I'll see it in my lifetime. 


As I said, I am always happy to answer any questions you have about Cystic Fibrosis. If you have any now after reading this post, comment below or DM me on one of my socials!

30 comments
  1. I kind of wished your answer was going to be a "yes" regarding the transplant being able to cure CF. It must be hard knowing there's no cure. Sending you love :)

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    1. It's just one of those things Jeannie, I've always known there isn't a cure for CF so it's nothing new to me!

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  2. What a wonderful idea and interesting post. I definitely love reading or talking with others and finding out more about their disabilities and I am always up for asking questions because like you said it is better to ask than assume anything! Thank you for sharing xx

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    1. It's always better to ask than to assume anything Gemma! xx

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  3. this was so interesting to read & taught me more about CF and the lifestyle around it. Thankk you for sharing your experience with CF & ways you go about the ups and downs it brings. :)

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    1. I hope you have learned something from this post lovely!

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  4. I had absolutely no idea that people with CF are advised not to meet up! It obviously makes perfect sense though. I totally agree it's always better to ask questions than not, I feel ignorant if I don't fully understand something so posts like this are super helpful!
    Amy x
    callmeamy.co.uk

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    1. I like that you have found this post super helpful Amy! x

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  5. I didn’t know much about CF so this was a really informative post. You have been very open and honest, it shows how strong you are. Thank you for sharing Lucy.
    Lauren x
    www.bournemouthgirl.com

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    1. I'm glad you found this informative Lauren! x

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  6. Great post Lucy! I enjoyed reading your thoughtful answers. I’m glad to hear CF hasn’t stopped you from travelling and that you’ve been enjoying staycations! Thank you for sharing!

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    1. Thank you lovely, I'm glad you enjoyed this post!

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  7. It is always so interesting to learn more sweetie.

    Danielle | thereluctantblogger.co.uk

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  8. Great post and thanks for answering my question. It's great to learn more about this as I don't know much about CF at all. I had no idea about cross infection, either. I'm so glad to hear about all the advancements in treatment!

    Corinne x
    https://skinnedcartree.com

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    1. I loved your question Corinne so thank you for sending it in! I hope this post has helped you learn a lot about CF x

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  9. Loved reading this post & thank you for including my question. I always love how open and honest you are about CF, I've learnt to much from you.
    Claire.X
    www.clairemac.co.uk

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    1. Thank you for sending in your question to me Claire, I really appreciate it! x

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  10. This is such an amazing post. Thank you for sharing this and opening up this platform for people to feel able to ask questions.

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    1. Thank you lovely and thank you for reading!

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  11. Thank you for sharing and being honest, I would much rather people would ask questions about endometriosis than just assume etc. so it's nice that you have posted a Q&A! It's good to learn more about CF, I had no idea about cross contamination within it x

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    1. I would always rather people ask me questions than people assuming something else entirely! Yeah the cross infection risk in people with CF is annoying as we can't meet properly! x

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  12. I know very little about CF, so thank you for being so open and sharing your story x

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    1. I hope you have learned something from this Q&A Lea! x

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  13. I didn’t know much about CF until reading this. It’s full of info and really open my eyes to what those of you who have CF go through. You are absolutely amazing and I thank you for being awareness to your illness and educating us. Really great post lovely Xo

    Elle - ellegracedeveson.com

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    1. Aww Elle, thank you so much for your kind words! I'm glad you have learned something from this post x

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  14. This was really interesting. My knowledge is pretty rubbish tbh, other than the book/film that was brought out and what I've seen from you. Lots of love xx

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  15. There's nothing wrong with adventuring around the UK. I would love to do the North Coast 500 around Scotland in a RV/Motorhome type thing. I imagine however long we were up there wouldn't be long enough as there's so much to see along the way.

    I think people can be so quick to want to escape to sunnier climes that they forget what we've got on our doorstep (She says from Copenhagen lol).

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  16. Thanks for sharing your Q & A, it has certainly answered the questions that many people have about CF :)

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