Living a full life with cystic fibrosis

By Jane Elliott
Health reporter, BBC News

Sophie takes care of her health

As a 20-year-old student Sophie Longton enjoys all the usual activities for someone her age, including a good social life.

Unlike most of her fellow students at Manchester University, however, Sophie has a chronic health condition - cystic fibrosis (CF) - a life-threatening, inherited genetic disease which disrupts, among other things, the way the digestive and respiratory systems work.

Although Sophie socialises regularly she cannot meet others with CF, because of the dangers of cross-infection and finds the internet a valuable tool for communicating.

She recently agreed to tell her story to a special website Youth Health Talk, which allows young people to learn about health from their peers.

Chronic illnesses

Sophie's section "Living Life with greater challenges" uses text, audio and photos to feature the stories of 31 young people living with chronic or long term medical conditions including CF, diabetes and muscular dystrophy.

"I think the website is such a fantastic thing if you want to share your experiences," said Sophie.

I work very hard with my CF I usually put in two hours a day into my treatments because I know how much benefit I get Sophie Longton

"You can go on the website and see how other people have dealt with their problems."

She said the internet was a particularly useful tool for people with CF.

"Generally, we can't meet up in person because of cross-infection.

Diagnosis delay

"At hospital we are all in separate rooms and are not allowed to go into each others rooms.

"At CF events, such as fundraisers, the organisers make sure there is only one person with CF there. And at CF clinic they have different appointment days for people with the same strain of infection.

"I can't be sure when I go out that I won't meet someone else with CF but none of my good friends at University, or people I go out with, have CF.

"I do just socialise with people I know haven't got CF.

"And if I bump into someone with CF while out socialising I ask them what infections they have and don't get in close contact with them," she added.

Sophie is passionate about sport and says she is convinced it is this that has helped keep her relatively healthy.

Her lung capacity is good and she is not currently ill enough to need to be placed on the transplant list.

"I work very hard with my CF," she said. "I usually put in two hours a day into my treatments because I know how much benefit I get and every day I am running and cycling.

A pair of lungs affected by cystic fibrosis

"I know the consequences if I miss my physio for one day. I know how bad it can be."

When Sophie was 17 she developed acute pancreatitis - an inflamed pancreas - and required intensive hospital treatment.

She said: "I think it was actually alcohol related because my pancreas is more sensitive. It gets blocked a lot easier and I ended up in hospital for about a week. I no longer drink."

She said that starting university had made her CF worse at first.

"My crazy university party lifestyle and CF don't really mix too well and within six weeks of being at university I got ill.

"The late nights and not eating a high calorie diet did not help."

Sharing experiences

Sophie hopes that by sharing her experiences other young people might get the answers to some of the questions they do not feel comfortable asking doctors or their parents.

Dr Ann McPherson, medical director and co-founder of the Dipex site, the adult arm of the Youth Health Talk site, said she hoped they could offer a unique style of help.

"Young people with chronic diseases such as cystic fibrosis can feel isolated in a bubble of self awareness about their health problems.

"They may be not only the only one in their class with their problem but even the only one in their whole institution.

"On this site they will be able to see and listen to the experiences of other young people from all over England and from a range of social backgrounds.

"They can hear how it was to be diagnosed, dealing with medical professionals, living their daily lives with their friends and their families, things that they have found helpful, people who have supported them and ideas that they have as to how to live their lives to the full."