Horrific kidney disease blights generations of Wetherby woman's family

Polycystic kidney disease (PKD) has defined Jayne’s life, from watching her mother battle the inherited condition to finding out at just 21-years-old that she had also developed the disorder.

Now 52, Jayne spends three days of her week on dialysis, for four hours a time to treat the disease, but she is not alone in her struggles.

Five of her mother’s ten brothers and sisters have undergone kidney transplants and only one of Jayne’s three siblings has been fortunate enough to avoid inheriting the condition.

And, just like her mother did, Jayne will have her son and daughter succumb to the disease after tests revealed they had not managed to escape the powerful gene.

Despite the disease, Jayne is still managing to keep up her full-time job but admits she is finding it ‘harder and harder’ to live a normal life as her condition deteriorates.

She said: “My mum started dialysis when she was 51 but after seven years my dad was able to give her one of his kidneys. Unfortunately it only lasted for about seven years before it gave up.

“She’s back on dialysis now and in October I was forced to start as well. My kidney function was at 11 per cent, then down to nine but when it got to six my doctor told me it was time.

“The process is gruesome and there are points when you think ‘why is this happening to us?’. It’s very upsetting and it really has defined our family.”

However, Jayne explained that having the condition never made her doubt her decision to try for children but was fully aware the odds were stacked against them.

Polycystic Kidney Disease is the world’s most common inherited kidney disease which affected between one in 400 and one in 1000 people worldwide.

More than half of those affected will have kidney failure by the time they are 60 and Jayne admitted it was difficult to break the news to her children.

She said: “We had to sit down as a family when I told them. My son wasn’t too worried until it happened to him but my daughter was quite upset about it.

“It’s like a time bomb for them. My daughter’s had a baby who will probably inherit it and wants another because she thinks by the time they get to 50 there will be a cure.

“But, that’s the same thing I thought when I was her age. We have just learnt to accept it but now I have no energy, I’m sick most days and have a grey complexion. At the moment I’m restricted, I’m wiped out and I can’t walk to the end of the road.

“It’s heartbreaking for my children to watch me and my mother like this knowing it will happen to them."

Jayne is now on the waiting list for a kidney transplant and has urged others to sign on the organ donor register and support the PKD charity.

She said: “We need a system where you don’t opt in for the register and, instead, you have to opt out.

“A new kidney would be an absolute miracle for me, it would give me a new lease of life.

“I have been waiting on the list for 18 months and I keep hope.

“They do seem to be working on a cure and there does seem to be awareness about the disease but there needs to be more.”