Scott Nell, 47, needs 250 pills a week to survive
A man from Durham was given two years to live after cold sensations in his fingers turned out to be a rare autoimmune condition
Scott Nell’s unusual symptoms began in November 2017 when his digits became ‘as white as paper’. As the months went on, the dad struggled with his breathing and found that his airwaves started to ‘shut off’ when leaning to one side.
Following a number of tests and hospital visits, he was diagnosed with a type of scleroderma called cutaneous systemic sclerosis.
Scott Nell, 47, needs 250 pills a week to survive (PA Real Life)
What is cutaneous systemic sclerosis?
According to the NHS, there are two types of systemic sclerosis – limited cutaneous systemic sclerosis and diffuse systemic sclerosis.
The type Scott suffers from suggests that the disease ‘usually only affects skin on the hands, lower arms, feet, lower legs and face, although it can eventually affect the lungs and digestive system too’, in colder temperatures.
In severe cases, it has the potential to be life-threatening and to cause physical disability.
Scott’s diagnosis
Doctors officially diagnosed Scott in March 2018 and he began chemotherapy treatment every month for a year, as the chemicals can soften skin and tissue around internal organs, he said.
While he must take 250 pills a week to survive, his chemo has now been reduced to once every six months.
His tablets includes morphine, to help with pain and breathing and paracetamol, of which he takes around eight tablets a day, followed by antibiotics.
Scott has opened up about his symptoms (PA Real Life)
“I was originally given less than two years to live and I’ve exceeded that already, I still feel like I’ve got plenty left,” Scott, from Houghton-le-Spring, told PA Real Life.
“There was something going on with my fingers and one occasion, I was working and laying a drive and it was snowing but it was so cold, I couldn’t stand it.
“I took my gloves off and my fingers were white, like sheet-of-paper white. I was really quite shocked and I had to go into the car and heat them.”
After a few months, he said he ‘woke up one morning and I could not straighten my arms and legs out, it took me a few minutes.’
“It’s difficult to sleep and I sleep on the sofa, it’s very rare that I actually sleep with my wife, because there I can position myself so I’m not tossing and turning,” Scott added.
“Sclero means hardening and derma means skin – so hardening of the skin. It can produce a lot of calcium deposits, which can sometimes cause scarring and disfigurement.
Scott with his wife, Charlotte, 48 (PA Real Life)
“I think because I was diagnosed really quickly it saved the best part of my appearance – I think actually the tightening of my skin probably took a few years off me.”
He said he ‘pretty much live in a certain amount of pain’, adding: “I’m on tablets to stop me from having diarrhoea, tablets to stop me from being sick, immuno-suppressing tablets.
“It’s a lot. I think some of my tablets are to combat the ill-feeling from other tablets.”
Scott said his wife, daughter from a previous relationship, and step-sons have found his disease difficult to process.
“My line of thought is their suffering, not mine.” he said, adding that he knows he’s ‘going to suffer for a long time and the end’.
He advised those who’ve received a scleroderma diagnosis ‘not to panic’, saying: “If you think you might have scleroderma, don’t back off if a doctor suggests it could be something else.
“Early diagnosis is the key – the sooner you’re on treatment, the longer you have to live, the longer you’ve got with your family.”