By Marios Papaloizou & Colin Rhodes
When Margaret Costello’s husband Jim lost his battle with a highly disfiguring form of cancer that ‘took half of his face’ her two daughters – both of whom suffer from the genetic disease – wondered if their fate was the same.
Jim suffered from Gorlin Syndrome: a condition that increases the risk of developing a host of disfiguring tumours – some of which can be cancerous.
Many of the growths are on the face, including cysts on the cheeks, jaw and even sometimes behind the eyes.
Sufferers of Gorlin syndrome have a 50/50 chance of passing the disease onto their children and, after Jim and Margaret lost their daughter of five and a half months to a mass of tumours on her heart, Jim was diagnosed with Gorlins.
The couple’s two daughters Helen and Jane also suffer from the condition and, due to the impact the disease has had on their lives, they set up the Gorlin Syndrome Group to support sufferers and their families.
Margaret told MM that, after the death of their daughter, her husband Jim said: “I don’t want anyone else to go through what we have gone through.”
As the Costellos battled against Gorlin Syndrome Margaret recalled times when her husband and two daughters were in different hospitals at the same time to have cysts surgically removed from their face.
“Between the ages of eight and 20 there wasn’t a year when the girls weren’t in hospital having jaw cysts removed,” she said.
Towards the end of Jim’s battle he would be in hospital up to five times a year sometimes for eight weeks at a time.
“We used to block holidays out. We’d say ‘right no treatment for those two weeks’ or ‘no treatment this week’ so we could spend some quality time together as a family,” Margaret said.
At the time of Jim’s death, aged just 51, Margaret told MM that he had been left severely facially disfigured by development of Basal Cell Carcinoma’s (BCC’s).
“He had lost his nose, ear and had also lost an eye,” she said. “He lost half his face to the condition.”
Despite Jim’s health issues he was determined to set up a group to help others and, since his death, Margaret has continued to run the Gorlin Syndrome Group in his memory.
BRAVE: Margaret Costello (top right), and her daughters Helen (left) and Jane (bottom right) with grandaughter Aimee
Sally Webster is one of the sufferers of Gorlin Syndrome that has benefitted from the group’s presence.
After being diagnosed with Gorlins, the group offered Sally support; she described Jim as ‘an absolute treasure’ as he was able to offer the opportunity to talk with someone who was also suffering like she was.
Sally says she has had ‘too many surgeries to remember’ since being diagnosed with Gorlin Syndrome.
Last week it was announced that a revolutionary new drug – that has been trialled at Salford Royal Hospital – would be made available to sufferers of advanced BCC’s that cannot be operated on.
Previously there were no treatment options available for these patients but the approval of the new drug represents a viable option that will have a radical effect on the lives of those suffering.
“It’s an absolutely fantastic opportunity that provides a treatment choice where people have no option at the moment,” Sally told MM.
“I was speaking to someone who was on the trial and I have seen the difference in them already.
“They don’t have pain or discomfort anymore. The large tumours on their face have disappeared.
“They’ve got confidence back they’re smiling again and they’re just transformed by this treatment, it’s just amazing.”
Dr John Lear, Consultant Dermatologist at Salford NHS Foundation Trust, hailed the miraculous drug for the impact it can have on the lives of those suffering with advanced BCC.
“There are patients with big ulcerative skin cancers on their faces which they’ve had for years and not wanted to go out, not wanted to engage with their family,” he said.
“They’re using dressings and they’re bleeding and now, with some patients, within three weeks all of their ulcerations healed up. The drug works amazingly quickly.”
As well as the host of physical issues that come with Gorlin Syndrome, Margaret highlighted the psychological problems that can also occur.
“There are times when people struggle mentally to cope with this. Quality of life is a real issue for people and there are mental health blips that require hospitalisation,” she said.
Sally is also acutely aware of this issue which is why she now works with the Gorlin Syndrome Group to offer support to others that are going through the same struggles she faced.
“It’s a chance to give back what people did for you when you needed it,” she said.
For more information about Gorlin Syndrome or for support in dealing with the disease visit The Gorlin Syndrome Group’s website at www.gorlingroup.org
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