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Mum calls for more support for rare condition
A MUM who has to cope with a rare genetic skin cancer has called for more emotional support for people with the condition.
Jane Costello, 36, lives in Stokenchurch with her partner, Paul Lewis and their six-year-old daughter, Aimee, who does not have the condition. At the age of four she was diagnosed with Gorlin Syndrome, which causes highly visible skin tumours.
Research, presented last month at the European Association of Dermato Oncology Congress, revealed 48 per cent of patients endure more than 20 surgical procedures although only 15 per cent are offered counselling throughout diagnosis and treatment.
Furthermore, 51 per cent of people undergo surgery every few months to manage their condition, with 49 per cent saying these surgeries have a significant emotional impact.
Jane said: "It just shows the amount of surgery someone with Gorlin Syndrome has, which has a significant emotional effect. "It showed 85 per cent of patients never received emotional support, like counselling, and had never been offered it."
Jane and her sister, Helen, were diagnosed when their baby sister, Anna, died at six months old from the condition. At the same time her dad, Jim, was diagnosed who had coped with the skin cancers during his life.
He set up a support group 20 years ago called the Gorlin Syndrome Group, which Jane is now on the committee of.
The group published the research. The findings are particularly significant as 97 per cent of patients undergo surgery to remove tumours, with 86 per cent of patients suffered from tumours on their face, 60 per cent on their arms or legs, and 52 per cent on their chest.
Jane said: "It is quite a rare condition. One in 30,000 people have it in the UK.
"Even some doctors don't know about it. It is good to have something like a support group to educate people to support the patients and family as well, to provide the information you need." In their teens Jane and Helen had a lot of jaw cysts which had to be removed from the jaw bone. They had to have a lot of operations as they were growing up.
When Jane's dad died she really missed the support, as she was very close to her dad. She spent four months in hospital. She said: "I was ok to start with. I struggled with depression- I have struggled through it. "I cope a lot better now. I am settled with my partner and my little girl- they cheer me up and keep me going."
She is also well supported by family and friends.
Jane would like every person with Gorlin Syndrome to have counselling, to be monitored as they should and to be able to see specialists doctors. Go to www.gorlingroup.org
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