Woman has thigh fat injected into her mouth because her whole body is hardening

This revealed she had Raynaud’s, a condition causing 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.’

But, two years later, when she was 17, Ashton began to develop painful ulcers on her fingers, as well as back and chest pain.

Referred to a rheumatologist at James Paget Hospital in Great Yarmouth, Norfolk – a doctor who deals with disorders of the musculoskeletal system – by complete chance, he knew a lot about scleroderma, and recognised the symptoms immediately.

Sent to the more specialist Royal Free Hospital in Hampstead, north west London, a chest X-Ray revealed scarring on Ashton’s lungs, leading to an official diagnosis of systemic scleroderma – a form of the condition affecting internal organs, including the heart, kidneys and lungs, as well as the skin.

Ashton, who was then 18, recalled: ‘Coming from a tiny town, having to go to London and meet with all these professors seemed really big.

‘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.’

Since her diagnosis, Ashton has remained under the care of both the Royal Free and west London’s Royal Brompton Hospital.

She added: ‘I have always felt in very good hands with the doctors, and the specialised care has come on so much.

‘But in those early days, I’d see patients on the ward looking just like the pictures I’d seen online, on oxygen and in wheelchairs.

‘It was daunting to think I could end up like that, too.’

The condition is now well known and Ashton explains it by telling people her immune system is overactive and attacking the healthy tissue in her body.

She continued: ‘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.

‘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.

‘I try to be independent, but they have made doing some things hard. For example, I struggle getting 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.’

While Ashton has tried to live as normal a life as possible since her diagnosis, but it has become gradually more difficult.

Sadly she had to give up her work as a key stage one teacher in November 2017, when she simply became too ill.

She said: ‘That was heartbreaking. I had worked as a teaching assistant and had an amazing opportunity to train as a teacher at that same school.

‘Mentally, work was brilliant for me. It was so full on that I didn’t think about my condition. All I could focus on was doing the best for my class.

‘But I soon noticed that whenever I had any down time, 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.’

No longer working, she has now vowed to dedicate her time to raising awareness of scleroderma, after receiving tremendous and ongoing support from the charity Scleroderma and Raynaud’s UK (SRUK).

By speaking out, Ashton hopes to educate the general public and encourage people to be more mindful of the fact that not all disabilities are visible.

‘One of the biggest problems I face is with using my blue disabled parking badge,’ she said.

‘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.

‘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.

‘Charities like SRUK are invaluable to people like me. I’ve used their website and helpline countless times.

‘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.’

MORE: Mum lost her twin babies and needed an organ transplant because of rare pregnancy condition

MORE: Mum fuming after school returned the ‘healthy’ sausage rolls she made for her son

The Fix

The daily lifestyle email from Metro.co.uk.

Source: Read Full Article