Sally’s story: My experience of CF diabetes (CFD)

Feature -

Developing CF diabetes (CFD) is one of the most common complications of cystic fibrosis. In fact, one in three adults with CF in the UK is currently living with the condition. As we publish updated clinical guidelines on the management of CFD, we hear from Sally all about her experience of CFD and her top tips for managing it.

Content warning: Eating disorders

I was diagnosed with CF at 14 months old. My mum knew there was a major problem; she's a nurse, so she has that nursing instinct as well as just a mother's instinct, and she had an inkling that I had cystic fibrosis. She spoke to the GP about it, and he said it couldn’t possibly be CF, as "it was so rare and hardly anyone has it". My mum had a GP friend who suggested she get a second opinion, which she did and I was tested and diagnosed with CF.

Growing up with CF 

Growing up, I was always very fortunate that I was still able to do most of the things that my friends could do. The only thing that cramped my style was the fact that my mum wouldn’t let me go to the cinema because of the smoking, or she would tell my teachers that I had to be kept in at break and lunch if it was a foggy day.   

When I was 16, Creon became available and I was able to venture from my low-fat diet. I should have been elated about being able to eat all this lovely food, but it was weirdly tainted. When I was 15, I developed an eating disorder and I ended up being hospitalised.  

I used to go to the Manchester Royal Children's Hospital which was known as Pendlebury Hospital at the time. I was being treated for my CF there and the doctors were concerned about my weight, so I was referred for an appointment with a psychiatrist at another hospital in Manchester. They decided I should be admitted, and I was put on the mental health ward. I was doing my O-levels and it was a very tough time: no music, no visitors, no entertainment, but I was allowed my schoolbooks to study. 

A wonderful physio who my mum knew, who treated people with CF at another hospital, made a call and luckily, I was moved out of the mental health ward and onto the CF ward where I was in a far happier place. 

Getting diagnosed with CF diabetes 

I was diagnosed with CF diabetes at 19 following a glucose tolerance test. I was working in a nursing home at the time, and I just kept eating jam sandwiches and reaching for the biscuits that we would take round on the trolley for the patients. One day at work I collapsed, and a few days later I was admitted to hospital once it was clear it was CF diabetes.  

It did hinder my plans to go to nursing training college, but eventually I did attend. I really struggled with my health; I didn't look after myself well enough, and I had a few eating problems again. I left the nursing course after a year; I couldn't juggle everything. I had a bit of downtime but then I found aromatherapy and that's what I ended up training in the year after. I also do reflexology, which I love. Nowadays I think my body is telling me I can't stand and massage all day and lift heavy things in the shop. I now work four days a week, only one day of those is physically demanding work, which I’ve cut back from three days.   

Day to day, because I'm used to exercising and keeping fit, I know what my body needs, and I therefore know if I can't go for a walk that morning, then I need a bit more insulin with my breakfast.


Managing my CF diabetes 

It took me a good couple of years to get used to it; doing the injections and making sure I was being careful at meal times and when I had sugar and sweet things. Having a sensor in my arm is the best thing since sliced bread. It was wonderful when that came in as it meant I didn’t have to prick my finger multiple times a day to figure out what was going on.   

Day to day, because I'm used to exercising and keeping fit, I know what my body needs, and I therefore know if I can't go for a walk that morning, then I need a bit more insulin with my breakfast. There are some days where I don’t really feel like lunch, so it’s about reminding myself to eat even if I don’t feel like it. I'm pretty good at understanding my body and they’re happy with my levels at the CF centre.   

For anyone who’s been diagnosed with CFD, I'd say don’t let it stop you from exercising! It’s so important for physical and mental health. And you can still enjoy food, it just has to be at the right times. It doesn’t have to cramp your style completely.   

Another tip would be to remember that carb counting and insulin doses will never be an exact science, so we should not beat ourselves up if levels aren't where we expect they should be. Chest infections can cause a rise in glucose levels; so hormones also have a part to play!

Hopes for the future 

With the wonderful modulators we have now, there will be more and more people living longer and so it would be good to see some more research to reflect that. I think sometimes I do find CF and CF diabetes a bit overwhelming when there's so much else going on with your body as well, most significantly, the menopause. 

*Always speak to your CF team if you have any questions about your CF diabetes.

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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