Five things to know about living with CF diabetes

Earlier in the year, Christian, Annabelle, Demi and Jeannine, who are based across Europe, spoke about their experiences of living with CF diabetes and a compilation was shown at a CF research conference. Annabelle and Demi were diagnosed with CF diabetes as teenagers, while Jeannine and Christian were glucose intolerant beforehand, and developed CF diabetes post-transplant.

How does it feel to be diagnosed with CF diabetes?

“I felt a lot of disbelief. I even asked for a second test because I couldn’t believe I had diabetes” - Demi

“It felt like the worst possible diagnosis that I could get at the time. I was very severely needle-phobic, and the idea of having to inject myself with insulin every day, if not multiple times a day, was the worst thing I could think of.” - Annabelle

“The transplant changed so much in my life that it was just one facet of many that I had to reorganise in my life, so it didn't affect me that much - at least at first.” - Jeannine

How does CF diabetes impact your  day to day life?

“It’s just a shame that it’s based on food! I really enjoy going out to eat. But it does come with some risks. Injecting insulin in restaurants is really difficult, so I end up injecting much less—to make sure I don’t get a hypoglycemic episode afterwards.

“Due to my CF diabetes, I’ve become very sensitive to fungal infections, especially during courses of antibiotics. So, managing CF diabetes has become a bit of an obsession. I want to have everything well-managed to completely prevent fungal infections.”

- Demi

“I cannot leave the house without my insulin pump and have to plan ahead to replace the pump every three days. Sometimes that bothers me more than others, like during a work meeting or orchestra rehearsal.” – Jeannine

“Having CF diabetes being affected by things outside of my control is quite mentally difficult. I wish more people were aware of this.” - Annabelle

What should we be aware of about CF diabetes?

All four of the people who shared their experiences commented on the psychological burden of living with CF diabetes – the planning to effectively manage the levels of glucose, in terms of managing the medicines, fitting in glucose monitoring and injections with work and social events, and preventing side effects through the rest of the body.

What’s your one wish for future research into CF diabetes?

“I would like there to be a focus on the variability in this type of diabetes. I could probably eat the same thing two days in a row, but one day my sugars may cope fine with it. And one day they may go too high or too low, even with the exact same amounts of insulin at the exact same times on both of those days.” – Annabelle

“My wish for cystic fibrosis diabetes research would be to research and develop methods to get the peaks under control immediately after meals. Because that's the biggest challenge for me—to assess this properly and then deal with it in everyday life.” – Christian.

Research underway in CF diabetes

We’re currently supporting two research projects on CF diabetes, one is a lab-based Development Award to Dr Ildem Akerman and Prof Vicky Salem to develop a novel treatment approach for CF diabetes. If successful it could remove the need for insulin therapy in the future.

Closer to the clinic, through our clinical trials accelerator platform (CTAP), we’re supporting a trial investigating whether closed-loop insulin delivery systems can improve glucose control and quality of life for people with CF diabetes.