Sufferers of a rare form of cancer claim they are “unfairly overlooked” when it comes to receiving emotional support.
Just one in 31,000 people suffer from Gorlin Syndrome - a condition which can leave them needing repeated surgery to remove skin cancer lesions from their body or cysts from their jaw.
While a new survey showed that 48% of patients have had to endure more than 20 operations to manage their condition, just 15% said they had been offered counselling to help them cope with their diagnosis and treatment.
The research also found 51% of sufferers had had to undergo surgery every few months, with 49% saying this had had a significant emotional impact.
The results of the survey were disclosed by the Gorlin Syndrome Group, a charity set up to provide guidance and information to patients and their families, at the same time as the research was presented to the European Association of Dermato Oncology (EADO) Congress in Hamburg, Germany.
Margaret Costello, the co-founder and secretary of the Gorlin Syndrome Group, said: “Quality of life is a real issue for people with this disease, not least because it requires such frequent surgery as well as regular hospital check-ups.
“While emotional wellbeing is a core part of cancer care elsewhere, it is being unfairly overlooked in this group of people and must be addressed.
“We hope this research further improves the understanding of this condition and leads to greater support for people with this lifelong genetic condition.”
Gorlin Syndrome is characterised by the development of multiple jaw cysts, known as keratocysts, as well as basal cell carcinomas (BCCs) - cancerous lesions in the skin’s basal cells.
There are almost 100 features of the condition - which is often the result of a genetic mutation sufferers have inherited - people can develop, including benign tumours which affect their heart function or a form of brain tumour called medulloblastoma.
A total of 67 patients with Gorlin Syndrome were questioned for the survey while six people completed it on behalf of a friend or relative who has the disease.
The call for more emotional support for sufferers was echoed by Rebecca Mulligan, 23, who was diagnosed with Gorlin Syndrome at the age of nine.
Miss Mulligan, from East Kilbride, South Lanarkshire, inherited the condition from her mother and has also passed it on to her two-year-old daughter, Georgia.
She said: “I think it would be really helpful if there was more understanding of the condition. I’m a healthcare support worker, so I see what kind of support other people can get.
“Addicts can get help really easily but we’re here, with a proper condition, and there’s no help we can get.”
The single mother gets jaw cysts as a result of the condition and has already had to have 10 operations to have these removed.
But she said her mother had developed BCCs as a result of having Gorlin Syndrome while her daughter has bifid ribs - another condition which is characteristic of the Syndrome, where the end of the ribs splits into two.
“My mum has lost count of how many operations she has had to have done,” she said.
Miss Mulligan undergoes regular check-ups at the Southern General Hospital in Glasgow to see if she has developed any new jaw cysts, which she described as being “hard or soft lumps in the mouth, which give a horrid taste”.
She said: “In total I’ve had about 10 surgeries to remove them.
“There have been times when I have had to have two operations a year, but then there have been other times when I haven’t had any operations for a couple of years.”
But she said “once the surgery is done that’s it”, with no emotional support provided.
“I really only have family members for support, with my mum having the condition she’s very understanding,” Miss Mulligan said.
“But I don’t find it difficult to cope with it - it’s what I’ve always had, so I’m used to it, but my mum can get really upset.”
Dr John Lear, consultant dermatologist at Central Manchester University Hospitals, said: “This condition has a profound impact on patients’ physical and emotional wellbeing, often causing hundreds of skin tumours across a person’s lifetime.
“More support is needed to provide the treatment these people need; it is simply not enough to treat the physical symptoms alone.”
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