A WOMAN whose rare condition is slowly turning her body to stone is about to have a Brazilian butt lift-style op to help ease her symptoms. At just 28, Ashton Rains has had to retire from job due to scleroderma – a rare disease of the immune system, blood vessels and connective tissue. It’s caused […]
A WOMAN whose rare condition is slowly turning her body to stone is about to have a Brazilian butt lift-style op to help ease her symptoms.
At just 28, Ashton Rains has had to retire from job due to scleroderma – a rare disease of the immune system, blood vessels and connective tissue.
It’s caused her skin to harden, painful ulcers to appear on her hands and feet, and has also scarred her lungs beyond repair.
The former teacher, from Lowestoft, Suffolk, is now gearing up to have a fat transfer treatment which will use similar techniques to a Brazilian butt lift.
It’s going to take fat from her belly or thighs which will then be enriched with her own stem cells and reinjected into her mouths and lips, in a bid to reconstruct her facial tissue and reverse the effects of internal scarring.
Ashton, who’s set to have the op on May 1 at London’s Royal Free Hospital, said: “Because the skin around my mouth has tightened so much, it’s hard to open.
“It looks wrinkled, as if I’m puckering my lips. I almost have a smoker’s mouth, despite never smoking.
“I’ve had the treatment once before in January 2018 and the visual effects were great, but more than that, I could finally move my mouth again.”
Having always been pretty fit and healthy, Ashton first started to experience health issues at 15, when she was sent home from school with a cold.
She took a nap and woke up to find that her hands had turned deep purple.
Understandably terrified, she told her parents who immediately took her to see their GP.
By the time she reached the surgery, however, her fingers had returned to their normal colour.
Ashton had a blood sample taken anyway, as well as a test which involved her placing her hands in cold water to see what happened to their colour.
That revealed that she had Raynaud’s – a condition which causes the blood vessels in the hands and feet to become incredibly sensitive to cold.
“I had no idea what it meant and had never heard of it before,” she said.
“I figured it was just something I would grow out of in time, like poor circulation.”
Two years later, however, she began to develop painful ulcers on her fingers, and began to experience debilitating back and chest pain which made it hard for her to complete her performing arts course.
“I had to do a lot of dance lessons as part of the course and would be really struggling with the pain,” she recalled.
Eventually, she was referred to a rheumatologist at James Paget Hospital in Great Yarmouth, who by chance was something of an expert in scleroderma.
He sent Ashton off to the Royal Free in Hampstead, north London, for a chest X-Ray which confirmed that she had the condition.
Then 18, she said that doctors warned her and her family not to Google the condition once she was diagnosed.
” When they told me my diagnosis, I couldn’t even pronounce scleroderma. All I knew was that sclero meant hard, and derma meant skin.
“My family and I were told not to Google it, but there was so little other information out there back then that we had no choice. Things are much better now, but then there were no factual, patient-friendly sites – just Wikipedia.”
When we opened the page, my eyes jumped straight to a line about 10-year survival rates. At the time, I felt relatively well, so it was hard to reconcile that could be me.”
She says that in the early days of her diagnosis, she’d see patients on the ward looking like the terrifying pictures she’d seen online – on oxygen and in wheelchairs.
“It was daunting to think I could end up like that too.
“It feels like my body is slowly hardening. The lining of my lungs has thickened and scarred, meaning my lung function is only around 30 per cent. I also have patches of tightened skin that look almost like vitiligo, which causes white patches on the skin.”
She continued: “One of the hardest parts of the condition to deal with on a day to day basis, is the ulcers. At the moment, I have 10 on my fingers and three on the bottom of my feet, but they spring up on my knees, elbows and under my nails, too.
“You can’t get the ulcers wet so when I have them on my feet I have to use special cushioned dressings and a waterproof sock that covers my leg in the shower.
Scleroderma is a rare condition which results in hard, thickened areas of the skin and sometimes causes problems with internal organs and blood vessels.
It’s caused by the immune system attacking the connective tissue under the skin and around internal organs and blood vessels – causing scarring.
There are different types of scleroderma.
Some are really mild and improve on their own but others can lead to potentially fatal issues.
Ashton has systemic scleroderma, which affects the internal organs as well as the skin.
It often starts as Raynaud’s, signs of which include:
Then other symptoms then kick in:
Diffuse systemic sclerosis will also result in:
Source: NHS
“I try to be independent, but they have made doing some things hard. For example, I struggle to get in and out of the bath, as I can’t grip much anymore. My partner Ross, who I met through work in 2007, is amazing though, and always there to help me on my bad days.”
Despite her increasing difficulties, Ashton still managed to hold down a teaching post until the end of 2017, when she became too ill to work.
Because of the demanding nature of teaching, she didn’t think about her condition much during the day.
“But I soon noticed that whenever I had any downtime, like half term, to sit back and take a deep breath, I’d get very mentally and physically ill.
“I pulled back on my hours, but continued to struggle until eventually taking ridiculously early retirement in November 2017. Initially, I had lots to occupy my time, but after a couple of months, the ‘now what?’ hit me hard.”
In June 2018, she tried to return to work at a different school but became so ill that she had to be blue-lighted to hospital with sepsis.
Now unable to work at all, she dedicates her time to raising awareness of scleroderma and supporting the charity Scleroderma and Raynaud’s UK (SRUK).
And there’s one other downside to Ashton’s condition.
She’s been taking cyclophosphamide, a chemo drug, to manage her symptoms.
Docs have now warned that it may have affected her fertility. As a result, Ashton and boyfriend Ross have been going to pre-pregnancy counselling to talk about what they may need to do to make falling pregnant more likely.
“My lung function would also need to improve for me to be able to carry a baby, and I’d be classed as a high-risk pregnancy, so would need to be admitted to hospital early and deliver via c section.
“And all of this is if I can even conceive. I have a feeling I’ll be forever waiting for my body to get that bit stronger.”
Aston is speaking out about her condition in a bid to help educate the general public and to encourage people to be more mindful about invisible disability.
She says that one of the biggest issues she faces is using her blue disabled parking badge.
“They don’t hand them out for no reason and I had to do a really rather gruelling assessment to get one, but I still get people gawping and staring at me when I climb out of my car after pulling up in a disabled bay.”
She continued: “To them, my condition may not be immediately obvious. I wish I could say, ‘I have scleroderma’ and that they’d know right away what it means, but there’s simply not enough information out there at the moment about it.
“Scleroderma is an absolute monster – there is no doubt about it.
“I believe that if more people knew about the disease and the impact that it has on each and every person diagnosed, it would take away the guilt that we as patients feel every day.”
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