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Finding support through our Helpline: Cheryl’s story
Being diagnosed at 32
My diagnosis with CF was very late; I was 32 years old and under regular reviews at the hospital for ongoing lung and chest infections along with other kidney issues. My initial thought when I heard the words ‘cystic fibrosis’ was dread and anxiety. I was told by my consultant and then sort of left to my own devices. Of course, as soon as I got home, I was straight online to find out more about CF and I can honestly say it made for a scary read.
I only knew a little about CF as my niece had been born and diagnosed with it a couple of years earlier. I presented a lot of similar traits to her when I was born which is why they decided to do some tests on me.
I did, however, call Cystic Fibrosis Trust’s Helpline a few days later and I can honestly say they were amazing and made me feel a lot better, explaining lots more about CF. All I could think about was the life expectancy of 41; I was 32 and I had an 8-year-old to think about. But the Trust were full of empathy and compassion and just listened to me, which is exactly what I needed.
We do an annual fundraising event for the Trust which we feel is a little bit of a payback for all the help and support that not only I receive, but everyone with this challenging condition.
Looking after myself in the winter
I try to steer clear of anyone with a cough and cold, but I still have regular chest infections and am in and out of hospital. I am on daily antibiotics, do regular physio and use my nebuliser and cough assist regularly too. Being poorly does mean that I miss out on a lot of events, but I have learned to live with that and try not to push myself and give myself plenty of time to rest.
My hope is that everyone with CF will get the new drugs available to help them and live longer and healthier lives. I would say to anyone newly diagnosed that there is a lot of help and treatments now available and to just try and be as positive as you can, which I know can be very difficult at times. But I really do believe that a positive mental attitude does make a difference.
Festive wishes
I love Christmas and it is my husband's birthday on Christmas Day too so double celebrations. But with the colder weather at this time of the year, I do have to be careful as I am at a much higher risk of picking up an infection, so I try to keep things low key in the build up to ensure I can keep myself well.
My festive wish is for a cure for this life-limiting disease, which would mean the absolute world to me and everyone affected.
Improvements over the past 60 years have made life better for many, but as old problems diminish, they can bring new challenges and fears. And there still is no cure. With your help, we’ll fund the research that makes life with CF unrecognisable from what it is today. Because we won’t stop until CF does.
