Helping children to get best out of life

IT might be the last word in style and elegance but behind the black ties and posh frocks the Ipswich and Suffolk Press Ball has a serious side - raising cash for charity.

James Marston

IT might be the last word in style and elegance but behind the black ties and posh frocks the Ipswich and Suffolk Press Ball has a serious side - raising cash for charity. Today JAMES MARSTON investigates.

IT'S 2pm on a Wednesday afternoon and it's time for the cystic fibrosis clinic at Ipswich Hospital.

Inside the paediatrics department it's colourful, welcoming and friendly.

The team that look after those with the condition are busy having a meeting, going over notes and preparing for the afternoon's work.

It's far removed from the glamour and sophistication of the Ipswich and Suffolk Press Ball.

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But while the night of nights may be an evening of glitter and magic the event has a simple aim - to raise as much money as possible for its chosen charities.

Since the first ball back in 1997 the event has raised thousands for charity and this year the Press Ball organising committee has chosen the Cystic Fibrosis Trust and also Disability Care Enterprise as the 2008 beneficiaries

Dr Jim Gould is the consultant paediatrician at the hospital.

Dr Gould said: “The Press Ball is an excellent idea. The Cystic Fibrosis Trust is involved in care management and research into Cystic Fibrosis throughout the UK.

“The trust provides support, advice and education to patents and parents and medical practitioners involved with Cystic Fibrosis.”

Dr Gould said the charity has national presence across the UK

He added: “Cystic fibrosis is the most common condition with serious health implications in this country. About one in 23 people are carriers of the gene which causes cystic fibrosis and if both parents are carriers there's a one in four chance of a child having the condition.

“About one in 3,000 children born have cystic fibrosis which means there is one child a year born with the condition in the Ipswich area.”

The condition is a complex one. It affects the lungs and digestive system.

Dr Gould added: “Untreated sufferers develop serious lung disease and do not absorb food properly. People with the condition used to die within the first five or six years of life.”

Today there is much earlier recognition of the condition thanks to neo-natal screening.

Dr Gould said: “We pick up the majority of cases by about two to three weeks of age. Early treatment can very much improve the prognosis.”

The monthly clinic monitors the progress of the youngsters with the condition.

Dr Gould added: “Those with the condition take a range of medication including enzyme capsules to help digestion, antibiotics, a high calorie diet, as well as physiotherapy.

“As they get older sufferers may become more severely affected by the condition and the majority have serious lung disease and receive hospital treatment.”

Dr Gould is joined by another doctor, two respiratory nurses, a dietician, physiotherapist and part-time psychologist.

Sandra Howarth, regional fundraising manager for the Cystic Fibrosis Trust said: “The Ipswich and Suffolk Press Ball is a fantastic opportunity not only to raise much-needed funds but also to raise awareness and the profile of the condition.

“Without support like this the trust would not be able to achieve its goals and objectives for those families that live with cystic fibrosis every day.”

The trust is currently pioneering research into gene therapy and clinical trials have begun.

She added: “The identification and isolation of the cystic fibrosis gene in meant that scientists could find ways of correcting the basic cystic fibrosis genetic defect rather than just treating the symptoms of the condition. The best way to do this is through gene therapy - replacing faulty genes with normal ones.

“As lung damage is the major cause of illness and death in cystic fibrosis, the first attempts at gene therapy are focusing on delivering genes to the lungs.

“UK based researchers have already demonstrated correction of the genetic defect in mice, the human cystic fibrosis nose and, most recently, in the human cystic fibrosis lung. The next step is to try to develop effective treatment for people with cystic fibrosis.”

The Cystic Fibrosis Trust has brought together the UK's leading cystic fibrosis geneticists. The scientists are based in Edinburgh, London and Oxford. And the money raised at the Press Ball will go towards this research.

As the clinic gets under way respiratory nurse Karen Richards takes a few moments to explain what the fundraising will mean to patients.

She said: “Cystic fibrosis can be a very debilitating disease. The amount of treatment depends on each individual and it is here at the clinic that we tailor treatment to each person.”

Karen, who also visits schools and knows all the families at the clinic personally, said education and improving knowledge about the condition is crucial.

She said: “This is a very emotionally draining condition and it is important there is wider recognition of what it means.”

The clinic is also used as an advice centre and is a regular part of the lives of patients.

Karen said: “We check lung function, monitor health, test blood and co-ordinate treatment. It is crucial patients come to the clinic.”

Teenager Adam Shaw, of Leiston, is among those familiar with all the staff at the clinic.

He said: “I'm here for a check-up. I'm used to coming here and come to the clinic every three months. It's good the Press Ball is raising money for the trust. It is good to have research done into the condition.”

Mum Lorraine mum, said: “It's excellent news the Press Ball is raising funds for the FT. It is a lot of hard work to live with cystic fibrosis and there is no cure. We live day to day with it and try to keep Adam as well as possible.”

Mrs Shaw said the clinic is an excellent facility for families living with the disease.

She said: “There's a big team effort here and I'd like to thank them all for what they do. Cystic fibrosis is much more common than people think.”

For Jessica Housego, a student at Gorseland Primary School, the clinic is a chance to get a cough checked that she has developed recently.

She said: “I'm here for a check-up and to see Dr Gould. Cystic fibrosis does change my life but I get used to it. I like netball, and basketball and gymnastics.”

For mum Pam the diagnosis of cystic fibrosis in Jessica was a difficult time.

She said: “She was my fourth child and I knew something was wrong. My GP told me I was depressed but there were so many signs.”

At the age of five months Jessica fell seriously ill and nearly died and it was then she was diagnosed with cystic fibrosis.

Pam added: “It was horrific so it's important to raise awareness and tell people about cystic fibrosis.”

- Have you been helped by the Cystic Fibrosis Trust? Write to Your Letters, Evening Star, 30 Lower Brook Street, Ipswich, IP4 1AN or send an e-mail to eveningstarletters@eveningstar.co.uk

Fast facts: Cystic Fibrosis symptoms

- Cystic fibrosis causes the body to produce thick secretions that particularly affect the lungs and digestive tract.

- Symptoms of cystic fibrosis can include a troublesome cough, repeated chest infections, prolonged diarrhoea and poor weight gain. These symptoms are not unique to cystic fibrosis.

- Cystic fibrosis affects a number of organs including the lungs and digestive system

- In older patients, insulin production can become deficient due to increasing pancreatic disease.

- People with cystic fibrosis are prone to developing bone disease (thin, brittle bones) due to the nutritional and other problems involved with the disease.

- Adults with cystic fibrosis are at an increased risk of bone disease because of the adverse effects of steroids taken to control lung disease.

- THE Press Ball will be held at the Hotel Elizabeth, Copdock, on Friday, June 20, music and dancing will be followed by an auction and tombola with prizes donated by a number of businesses and organisations.

If your business or organisation would like to donate a raffle or auction prize to the prestigious event or book a table please contact Bridget York on 020 8429 7530.