Evening Telegraph (First Edition)
‘I want to show people you can live a normal life despite this gene’
However, the family are waiting to see if his twin sister’s children do have the condition.
James Williamson, 36, from Liff, told the Tele that he and his twin Jennie discovered in 2011 that they are carriers of the faulty gene SDHB.
It causes phaeochromocytoma tumours and claimed the life of their mum, Sue, 13 years ago.
Phaeochromocytomas — which can cause heart palpitations, sweating and severe headaches — can develop at any age and around one in 10 are cancerous. James is living with a “sausage sized” tumour in his neck caused by the gene and has already had four non-cancerous tumours removed from his stomach.
Jennie has undergone radiotherapy for an inoperable tumour in her neck which grew so large it threatened to stop her breathing.
James said: “It was such a relief to learn that my daughter, Abbie, 10, had not inherited the gene.
“However, my sister’s children, Anatswa, 3, and son Kupa, 2, are still too young to be tested.
“It will be a couple of years before we know if they’ve inherited it.
“My tumours are not cancerous which is the main thing. However, the one in my neck could turn cancerous and it could grow.
“It is wrapped around my carotid artery which means that surgery to remove it would be very tricky. My best option is to have radiotherapy to try to shrink it.
“I just get on with things — there are plenty people in a much worse situation than I am.
“I want to draw attention to this condition and show people that it is possible to live a normal life.”
James said his mum was diagnosed with cancer in 1993, which was caused by the faulty gene.
At the time, she was given only six months to live but thanks to treatment lived for another 10 years.
James said it wasn’t until 2011 that it was possible to test for the SDHB gene. He said: “We found out that Jennie and I had both inherited the gene — but our other brother and sister hadn’t.”
Cancer Research UK is trying to find a cure for the condition. His dad Jo, from Auchterhouse, is a Cancer Research UK ambassador in Scotland. He said: “In 1993 my wife was diagnosed with cancer and given six months to live.
“A few years ago we found it was possible to genetically test for the gene which caused my wife’s cancer. My four children were tested and my youngest two have inherited the faulty gene.”
Jennie said: “I am hoping and praying that my children do not have the faulty gene.
“But if they do then we will have to take things as they come and I am just praying they don’t develop tumours of any kind.
“When I was going through radiotherapy treatment for the tumour in my neck I was so worried that I wouldn’t see my kids grow up. “It’s been a tough few years.” The family are urging people to support World Cancer Day on Saturday.
A DUNDEE firefighter spoke today of his relief at discovering his daughter has not inherited the rare genetic condition that led to the death of his mum.