A brave Wigan mum has spoken of her 10-year battle with a rare and incurable bone-eating disorder.
Sarah Whyte is one of the few people in the world to suffer from Gorham’s disease which, in her case, has already eaten away a substantial part of her skull.
Doctors know very little about the condition and so to an extent the Ashton 51-year-old has been something of a guinea pig in terms of treatment.
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Although it isn’t a cancer, she was at one time recommended radiotherapy at Clatterbridge Hospital on the Wirral, but that only served to accelerate the problem.
For the last four years she has been on a gruelling and continuous course of chemotherapy which has kept the disease in check - but at a price.
It leaves her exhausted and very often house-bound, while the illness itself nonetheless causes her a lot of bone pain all over her body.
Being a nurse until she was forced to give up her job because of her ill-health, she is allowed to self-medicate, saving lots of arduous trips to and from hospital.
But she said that she and her “magnificent” doctor Jagdish Nair at Aintree University Hospital have between them decided to cease the treatment in a few months’ time.
Sarah said: “The treatment has really slowed me down and, while the chemo has proved remarkably successful in preventing the disease’s progression, I cannot carry on taking it forever because it is seriously affecting my quality of life.
“I could fall asleep on a washing line sometimes I am that exhausted.
“I am going to give it one more year and then stop and see how it goes. Dr Nair would carry on doing the scans and we hope for the best.
“I am a bit scared of doing it, if I’m honest, but it has to be.”
The ardent Latics fan was driving home from a match in 2008 when she first noticed that a hole (“about two thumbnails’ width”) in the top of her head had suddenly appeared.
“Understandably alarmed, she went to see her doctor and over the next three months she was passed from one baffled medic to another and subjected to a battery of X-rays and MRI scans before experts in Florida finally confirmed Gorham’s disease.
Sarah said: “There’s a theory that it starts in the womb but really no-one knows much about it.
“I have been to Dallas to meet other people who have had it, which was fantastic, but quite a few of them have passed away since.
“The disease can attack any bone of the body - in my case it was the skull - and then it can pass into the lymph nodes and into the organs which is when it can really cause problems.
“As it is there is quite a large part of my skull gone now. The skin is still there and there are some bits where the bone is very thin. I wear a plastic skull cap when I go out and of course I have to be very careful about not banging my head on anything because the repercussions are obvious.
“I have a lot of bone pain all over my body and have trouble with my lungs too, although that could be the chemotherapy.
“I feel lucky because a lot of people haven’t had any treatment at all for Gorham’s - fortunately I have Dr Nair though.
“Fatigue from the chemo though is almost constant. I spend most of my time in bed. If I want to go out, we usually have to plan it at least a day in advance by my easing off the chemo.”
Such an event happened on Saturday when Sarah thought she was going for her birthday meal to Rigaletto’s at the DW Stadium with husband Jimmy and grown-up children James, Sam and Bethany.
But when she got there, she found instead she had been given a hospitality box for the match between Gillingham and her beloved Latics.
Family friends arranged for her to meet chairman David Sharpe who in turn brought up star players Dan Burn, Nick Powell and Will Grigg to meet the star-struck VIP.
Mr Sharpe then went on to Twitter to dedicate Latics’ victory to a tearful Sarah. And he has since gifted the Whytes a box for 10 at next Tuesday’s Blackpool game.
Sarah said she never fails to be humbled by people’s acts of kindness, not least the charitable efforts of her own family who have helped to raise thousands for Gorham’s disease research.
Her sons have run both the Wigan and Manchester 10ks, a family friend did a sponsored trampoline bounce and there has been a party with a DJ and auction.
The latest event, at Stubshaw Cross Labour Club, itself raised £3,000 and in all Sarah reckons that £7,000 has been sent over to researchers in Florida.
She said: “Nobody knows about this illness so every little helps. We need to get messages out there about it as well as raise money for research into it.”
Sarah said she was planning to attend another Gorham’s disease conference in America in July.