Perspectives on the UK CF Registry

Yesterday we released the latestdata report from the UK CF Registry, giving an insight into cystic fibrosis and life for those with the condition in the UK. The report also shows how far we have come in beating cystic fibrosis for good since 1964, when 90% of people with the condition would die before they were 10.

To put perspective on what this data actually means, we’ve asked Sally Smith, a parent of a child with cystic fibrosis, and Dan Longhurst, a 21-year-old student with the condition, to share their stories and hopes for the future

Sally

As a parent of a pre-teenager, I feel the latest Registry Report is very positive and it’s great that CF adults and parents of children with CF agree to be a part of the UK CF Registry. It gives the Cystic Fibrosis Trust valuable insight into patients’ lives enabling their research into the disease and raising the standard of care across all CF centres.

I was pleased to see that there has been a decrease in pseudomonas across the age groups – it is a word that parents dread hearing at their clinic appointments. My daughter took part in a research trial in 2012/13 which looked at taking preventive measures to halt the growth of pseudomonas in the early stages of a chronic cold. As isolating as CF is, for both children and parents, the new protocols instigated across clinics with regards to cross-infection and early treatment have obviously helped. 

As a mum, your natural instinct is to ‘wrap them up in cotton wool’ when you first receive the diagnosis but it’s not really an option. And as I enter into those teenage ‘non-compliant years’, I find the news that 70.9% of people over 16 are in employment or further education encouraging – I just need to find more interesting and fun ways for her to enjoy physical activity.

Dan

I'm Dan, a 21-year-old university student from Essex studying Animal Conservation & Biodiversity, living my life to the fullest with my old pal cystic fibrosis.

I was diagnosed with CF when I was just a month old, and had to battle the highs and lows of the condition all my life (obviously). I’ve never let it stop me accomplishing anything I’ve wanted to do in life.

The first of the two distinct parts of my life that I found the hardest was  when I was at secondary school, when I realised I was not like everyone else. Because I didn't know any different than having CF when I was younger, I was oblivious to the difference between me and my friends, but growing up and releasing I was "different" was hard.

The second was when I went to college: becoming more independent with my treatments and balancing my social life was a struggle.

The hardest part of having CF I feel is not the treatments or the inconveniences of being ill. I found, when I was younger, it was being made to feel different from everyone else, constantly explaining to new people what CF was and why I do certain things (such as taking Creon when I eat), and not having/knowing anyone that was going through what I was (due to cross-infection).

My Mum (Tina), Dad (Martin) and family have always have been there to support me when I have been unwell. The biggest turn around in my health and lifestyle when coming to terms with having CF was meeting my girlfriend, Rosie, who has convinced me that I am no different to any other person and without the condition “you would not be Dan”. Now my outlook is completely different on life and I just simply “get on with it”.

These two perspectives show how the hopes of parents like Sally become the reality for people like Dan. Share your story too and help us show the progress made in beating cystic fibrosis for good.