'I think people underestimate how complex CF can be, and how difficult it can make day-to-day life'

CYSTIC fibrosis patients given the chance of longer, fuller lives thanks to NHS miracle pills are revealing the hidden problems of the condition in a new awareness campaign.

- BY CHRIS RICHES

The cruel genetic disease, which affects 11,300 Britons, is widely known for affecting the lungs with clogging, sticky mucus.

But it can manifest itself in many ways, from dangerous gut issues to a particular form of diabetes.

During lockdown the Express helped secure lifesaving CF drugs Kaftrio, Orkambi and Symkevi on the NHS. And in July the health service agreed a deal with US pharma giant Vertex for new miracle pill Alyftrek.

These have helped contribute to the doubling of life expectancy of patients to 64 from just 31 in 1997.

But as Alyftrek deals were also agreed in Wales and Northern Ireland on Monday, the Cystic Fibrosis Trust fears public understanding of the disease's complications remain worryingly low.

Margot Clark, 21, is one sufferer of the lifelong, life-limiting condition who needs multiple daily treatments and therapies just to stay well.

The Cambridge University forensic science student has CF and Distal Intestinal Obstruction Syndrome (DIOS), a gastrointestinal symptom of the genetic condition.

She said: "My day-to-day life consists of loads of medication, rest, snack breaks and [drug] Creon for digestion.

"I've been really lucky to not have any chest treatments as my lungs are fantastic, but I still have around 30 tablets of Creon and 20 tablets for other treatments every day - this really surprises people.

ROLLERCOASTER

"Explaining CF is difficult for me without comparing it to other, more common conditions to draw examples from. As a result, I think people underestimate how complex CF can be, and how difficult it can make day to day life.