She has lost her husband, her niece, her nephews and is more likely to get cancer yet Jennifer Martin is striving to help others understand her condition.
Lynch syndrome is a rare condition that runs in families and increases the chances of getting bowel cancer and other types of cancer.
Jennifer, along with four of her siblings, has lynch syndrome and four of her family members have had cancer.
After the death of her niece Kirsten Lishman and the national campaign following cancer campaigner Stephen Sutton’s death, Jennifer decided to set up Lynch Syndrome UK.
“I just thought I can’t let somebody else die, I can’t not do anything, or be responsible for any more deaths,” says Mrs Martin from Ingleton.
“There are so many people out there who have never been tested.”
Kirsten had a hysterectomy, like Jennifer, to help lessen her chances of cancer.
She decided not tell anybody as shortly before her cousin was killed in a car accident. In 2010 after looking at possible IVF treatment Kirsten was told she had cervical cancer.
Her progression took a turn for the worse when doctors said the cancer was terminal.
A 14-hour operation extended her life for two and a half years but sadly Kirsten lost her battle on September 14, this year at the age of 42.
Mrs Martin said: “When Kirsten was in hospital she said I won’t be here this time next year and I said I can’t fix that but I will be here for you.”
Because the family have the gene, monitoring is regularly put in place to check for any signs of possible cancer.
But Jennifer feels more needs to be done for people who are not aware they have lynch syndrome.
She said: “I suppose in one way I’m lucky because I’m aware of my lynch syndrome so therefore I’m monitored but there should be more monitoring.
“A lot of people are frightened, they’ve got their hopes and dreams like anybody else but they can’t get past the syndrome, it’s there and it’s a constant worry to some people.”
As well as being there for her niece, Jennifer was also there for her husband, Roy, who had a form of lung cancer and died at the age of 63.
The cancer, which affected his lungs, left Roy paralysed for the final eight months of his life.
Jennifer stayed at home with her husband but said it was a happy time.
“We had a good time, it was the best time I’ve ever had which sounds a bit crass but a lot of people close down doors and won’t let people near, but we did it differently.
“For some families it would be like a time bomb.”
Lynch Syndrome UK currently has 212 supporters and aims to have a national register.
“Everybody who is on the committee has lynch syndrome and has had surgery to various degrees but we are being pro-active and I think any change has to be patient led,” says Jennifer.
“I want things changed and I want things changed now, we need all the NHS to understand.”
During their lifetimes, those diagnosed face up to an 85 per cent risk of contracting colon cancer while women have up to a 65 per cent risk of contracting endometrial cancers.
An increased risk exists of contracting a number of other cancers, including those of the stomach, pancreas, kidney/ureter tract, hepatobiliary tract, gastric tract, prostate, ovaries, gall bladder duct, brain, small intestine, breast and skin.
Mrs Martin said: “It’s nobody’s fault, it does upset a lot of people to think they have passed lynch syndrome on.
“We have got fed up of being fobbed off, I will make a fuss because it is important. I’m not going to let lynch syndrome define who I am.”