Psychological support service, the Chronic Granulomatous Disorder Research Trust

Chronic granulomatous disorder is a rare and life-threatening genetic condition which affects just one in 150,000 people.  It’s an inherited condition which means it can be passed from parents to their children.

People with the disorder are born with a faulty gene in their bone marrow which means their white blood cells can’t fight infections as they should.  They’re very susceptible to bacterial and fungal infections.  These can lead to all sorts of problems, like abscesses on internal organs, continuous bowel problems or serious chest infections.

Daily antibiotics or antifungal treatments help to keep infections at bay, but serious problems can still arise, resulting in long periods in hospital.

Jeans for Genes already helps to fund two clinical nurse specialists through the CGD Research Trust.  One is based at Great Ormond Street Hospital and focuses on the needs of children, while the other at Wythenshawe Hospital in Manchester specialises in the care of adults.

This year, we'll be helping the CGD Research Trust to offer a new psychological support service.  It’s being developed by Dr Nigel North, a consultant clinical psychologist at Salisbury Hospital in Wiltshire.  The service will offer emotional advice and support to anyone in the UK affected by CGD.

Ciaran

Ciaran's story

9 year old Ciaran lives a hectic life with his parents, brother Daniel and sisters Megan and Tallulah.  He loves bike-riding with his friends, playing basketball, and ‘loads of music and films’. His Mum, Lea, says he is a ‘normal healthy, annoying 9 year old!’

Like his 19 year old brother, Ciaran is affected by chronic granulomatous disorder.  He can become seriously ill from sources of infection like building dust or grass cuttings, that wouldn’t cause problems to someone with a fully working immune system.

Because they knew his brother had CGD, Ciaran was tested for the condition as soon as he was born.  He could then begin the daily medication to keep life-threatening infections at bay.

"Jeans for Genes means a lot to us.  It means the CGD Research Trust can give us support.  We can turn to the CGD nurse when we need her, and we hope the research they fund will find a cure.  Please keep doing Jeans for Genes Day – you make a difference to my family every day.’ Lea, Ciaran's mum

Last year was the first serious illness that Ciaran faced and a family holiday to Spain was cancelled. It was a worrying time.

"It really reminded us that we are very lucky, compared to other families I know who are affected by CGD," says Lea.  "Our families are a great support and while Ciaran was in hospital, I knew that they were looking after his sisters. It can be difficult but we do just have to get on with things!"