Source: Warrington Guardian
Date: Friday, 2 October 2015
Written by: Adam Everett
A CYSTIC fibrosis sufferer will trial a new breakthrough drug that he says he has been waiting for all his life.
Peter Trengove from Woolston suffers from the life-shortening inherited disease which is caused by a faulty gene.
This faulty gene controls the movement of salt and water in and out of cells, meaning that the lungs and digestive system of cystic fibrosis sufferers become clogged with mucus – making it hard to breathe and digest food.
Peter’s older brother Paul died of cystic fibrosis aged six, and Peter himself nearly died at three days old because of the disease.
But now the 36-year-old will trial a new drug called QBW251, which could help reverse the cause of the effect by the faulty gene and become the closest thing to a cure for cystic fibrosis yet.
Peter, who has a prescription of 15 medications to battle the disease, said: “The condition can cause life-threatening lung infections and serious digestive problems where reduced absorption of fats and proteins results in vitamin deficiency and malnutrition.
“It is one of the most commonly inherited chronic lung diseases in children and young adults.”
“The affect cystic fibrosis can have on a person’s life depends on the strain – in my case I have a mild strain on both lungs and digestive system whereby you can’t tell I have cystic fibrosis.”
“Although I lead as normal a life as possible there have been occasions in my life whereby even I nearly passed way from severe illness.”
“The earliest age was at three days old following a major operation to remove black sticky stools from my bowel – this left me seriously ill whereby it was touch and go.”
“Luckily I’ve lived to tell the tale.”
“Other cystic fibrosis people with a more severe strain could spend what feels like most of their life in hospital.”
“They could find it hard to secure a job due to how ill they are, find it hard to keep their weight up, be on intravenous antibiotics, be on oxygen or sadly die at a young age.”
“Whilst I was attending a health check I was approached by a nurse who told me a trial study of a new drug was taking place whereby the drug worked with cystic fibrosis of my genotype.”
“I was later given further information once I showed interest in taking part whereby I was delighted to find out it was a breakthrough I had waited a lifetime to see happen.”
“In my parent’s case they’ve been waiting 44 years as they lost their first son Paul to cystic fibrosis in 1977 at six years old.”
“Cystic fibrosis doesn’t only affect me, but my parents will have suffered sleepless night worrying about my health in times when I was ill.”
“Should this drug work this will have a huge impact on over 10,000 cystic fibrosis sufferers who regularly face the risk of chronic lung infections and spend a lot of time in hospital as a result.”
If you have Cystic Fibrosis or know of someone with Cystic Fibrosis and interested in taking part in this study, contact 0800 655 6553 for more information.