“More research desperately needs to happen so everyone with CF can benefit from vital treatments ”: Charlotte shares her story
Can you tell us a little about yourself and your CF journey?
I was diagnosed with CF at birth as I had meconium ileus (a bowel obstruction). Thankfully I wasn’t too unwell as a child. I didn’t have my first lot of IV antibiotics until I was eight years old, and the second time I had them, I was 16.
Thanks to my parents, I had a very normal childhood and was very sporty. However, after going to university to study psychology and criminology, I stopped looking after myself as well as I could have, and my health declined a fair bit after catching swine flu. At this time, my lung function dipped to 47%.
Then after getting sepsis twice in a year, my lung function dropped even further to just 33%, which really took a toll on my mental and physical health.
When the CFTR modulator Kaftrio was approved in 2020, it gave me a lifeline. My health improved dramatically on Kaftrio, and now my lung function is stable at around 92%. Now I try to lead a normal life. I work full-time as a Recruitment Adviser and recently gave birth to my beautiful baby boy, Archer. There are times when I will still have a “bad CF day”, but I try not to let CF defy who I am.
How did it feel to have your baby boy, and what do you love about being a mum?
Becoming parents was something my husband and I feared may never happen, so having Archer in July last year was truly a dream come true. We were desperate to be parents, and after being unable to conceive naturally, we opted to have IVF.
Archer is most definitely a gift, and he even made his appearance one day after my birthday. I love being a mum and watching him grow. He’s a very curious baby with the funniest little personality already.
How do you juggle CF and being a mum?
There are days when having a baby whilst juggling my medication is very difficult, but I try to have a rough schedule and set aside extra time for my treatments. The hardest part is looking after Archer when I don’t feel 100% myself, which is why I’m so grateful to have a strong support system around me, including my husband and family.
As a newborn, Archer actually found my I-neb very soothing, and it even acted as a form of white noise!
What would be your advice to other people living with CF?
Remember, it’s OK to have down days. We all have them; it doesn’t make you weak or a failure. Take all the time you need to get yourself back to where you need to be. Join Facebook groups and speak to like-minded people; I have met some amazing people online who have helped me through so much.
What does Cystic Fibrosis Trust mean to you, and how has the Trust supported you on your CF journey?
Cystic Fibrosis Trust has helped me so much through the years, from writing medication letters to take abroad to providing information resources to give to my employers to explain CF. The fundraising team also directed me to purchase some charity pins that I used as my wedding favours. The Trust’s social media pages are also amazing at keeping us updated with all the latest research.
Why is more research into CF so important?
I’m very grateful to be on Kaftrio, but there are many other people with CF who can’t take it. More research needs to happen so everyone with CF can benefit from these vital treatments.
What does a life unlimited mean to you?
I may have CF, but I will do all I can not to let CF have me. I have dreams and ambitions that I want to achieve without CF getting in the way.
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.
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