Sunday Stories | Josie's Cystic Fibrosis Story

Sunday stories is a series on my blog where every week a different person talks about their condition (physical, mental etc.), shares their story and raise awareness. For the past 5 years I've used my blog as a space where I could do just that but I wanted to extend things even further to allow others to talk and raise awareness of their conditions. I'm really excited to introduce everyone to you! Today the lovely Josie is sharing her story and journey with Cystic Fibrosis, I'll hand things over to her, I really think you'll enjoy learning more about what she has been through recently.

Can you tell us a bit about your condition and how you were diagnosed?

I was born with cystic fibrosis (CF), which is a life shortening genetic disease that affects multiple organs but primarily the lungs and I was diagnosed at age 2 after constant chest infections and struggling to digest food. Our original GP dismissed my mum's concerns as being 'a paranoid mother' and I only got a diagnosis after she switched doctors!

How does your condition affect you on daily basis?

I was lucky enough to receive a double lung transplant in July 2016 after CF had damaged my lungs so badly they were failing on me. Prior to transplant I was doing hours of physio a day and countless nebulisers and tablets to try and clear my chest and be able to breathe and I spent long periods of time in hospital. I struggled to do the simplest of tasks such as wash my hair or walk up the stairs. Since receiving my new lungs I'm able to do all these things with ease, plus more! For the first time in my life I'm as 'normal' as I'm ever going to know and the future is looking bright. However as wonderful as it is transplant is not a cure, it comes with many complications and I still have to take medication daily. I'm not sure how much time I'll get with my new lungs but that just makes me more determined to enjoy every day and live life to the full!

Do you have any tips for someone who is newly diagnosed?

I would tell someone who is newly diagnosed to have hope! The prognosis for people with cystic fibrosis gets better every year as new treatments become available which is so exciting. That being said, it's really important to look after yourself as well as you can so don't skip treatments or exercise even though I know it's SO time consuming and dull.

What is one thing you would like people to remember about your condition?

One thing people should remember about cystic fibrosis is that often people with it don't want sympathy but for people to be understanding and take into consideration the limits that living with CF can bring. And please don't mention the cough - we quite aware of it, thank you! 

You can follow Josie on Twitter, Instagram and she also has her own blog, go have a read! You can get support and find more information about CF on the Cystic Fibrosis Trust website.