Mums kick off network for CF sufferers
CYSTIC Fibrosis can mean an isolation for both the sufferers and their families. But when two mums got fed up with the limited support in the county, they decided to set up their own network to help one another out.
By Jessica Nicholls
BY JESSICA NICHOLLS,
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CYSTIC fibrosis can mean isolation for both the sufferers and their families.
But when two mums got fed up with the limited support in the county, they decided to set up their own network to help one another out.
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Working in liaison with Ipswich hospital, Yvonne Whalley from The Avenue in Trimley St Mary and Tracey Ball from Westerfield set up the Ipswich and District Cystic Fibrosis Support Group.
Mrs Whalley's 12 year-old son Adam has cystic fibrosis and she has found the support group to be a major help in her life.
The 35-year-old said: "You need to be able to communicate with other parents. But cystics can pick up infections that other people don't and if they are together they can cross contaminate. The infections then just spread.
"Because the children can't get together it means that the parents don't often meet up and just see one another in passing, usually at the clinic."
Although most people think that cystic fibrosis just affects the lungs, it depends on each person where the biggest effects are felt.
Adam has problems with his liver, he also has asthma and has to take a total of 60 drugs as well as having numerous physiotherapy sessions every day to clear his lungs.
At the moment there is no cure, although some people do get lung and liver transplants.
It is a life-threatening illness and the average age that sufferers live to is around 20-25 years.
Funding for research into the condition is limited.
Adam's young life is taken up by the illness, with the physiotherapy sessions, taking his tablets and doing his homework, it is difficult to fit in much of a social life.
He is, however, a good friend of ten-year-old Georgia Ball, another cystic fibrosis sufferer and the pair featured in The Evening Star earlier this year in a shirt swapping fundraiser between Ipswich Town and Bradford City football clubs.
The shirts were auctioned off to raise money for the group and Ipswich Town have raised around £500. Bradford are still counting their money so the final total is yet to be announced.
In February Adam and Georgia have a VIP day out at the Bradford ground.
Boots store in Tower Ramparts also held a number of sponsored events and managed to raise more than £200 for the group.
Mrs Whalley is delighted with the response and since February the group has attracted 17 families.
The group meets in The Swan Pub at Westerfield and is just for parents, grandparents and family friends who help out and go along for a drink and a chat.
For further information on the group call Yvonne Whalley on 01394 670986 or Tracey Ball on 01473 785053.