**WARNING: GRAPHIC IMAGES**
A remarkable woman whose determination has seen her achieve everything from career goals to becoming a mum, despite needing 30 amputations in six years, has modestly claimed she is simply “adaptable."
Dogged by debilitating health problems since her schooldays, Sarah Cox, 32, of Kingswood, Bristol, has refused to give up on any of her dreams without a fight – passing her A-levels, joining the police and even having a baby.
Married to Rob, 34, a university transport manager, Sarah, who now campaigns to raise awareness of her health conditions – Raynaud's, scleroderma and lupus – said:
“I do have those private moments when I wobble, and I have cried a lot and felt lonely going through this over the years. But I am stubborn, and I am determined to get as much as I can out of life."
Sarah CoxPA Real Life/Collect
Diagnosed with a very aggressive form of Raynaud's disease, affecting blood circulation to the hands and feet, aged 17, Sarah also has two autoimmune conditions, making the body attack healthy cells – systemic sclerosis, also known as scleroderma, causing hardening of the skin, which can also damage internal organs, and lupus, a long-term condition causing inflammation to joints, skin and other organs.
At its worst, the incurable condition can be life threatening – causing damage to the heart, lungs, brain or kidneys.
Yet Sarah – who has lost most of her fingers and one toe and was medically retired from her job as an incident receiver with the police, which involved answering non-emergency calls, in 2011 – has always refused to see herself as a victim.
Recalling her schooldays, Sarah, whose son James is now 10, said:
“My hands would go purple when it was very cold. One of my schoolfriends said I should get checked out, so I went to the GP who sent me straight to the rheumatology clinic, where the specialists said, 'We need to get you into hospital and start treatment today'."
“I felt their words wash over me as they told me I had Raynaud's and lupus. I was just thinking, 'This is not part of my life plan. I'm going to university'."
“I was given steroids intravenously to help with the joint pain I had in my knees and wrists and was in hospital for a fortnight while they treated me for the damage done to my organs."
Sarah CoxPA Real Life/Collect
As soon as she was discharged, Sarah returned to school to study for her exams and when one of her teachers told her nobody would think badly of her if she dropped out to prioritise her health, she just replied:
“I'm going to get my A levels, watch me."
True to her word, despite numerous stints in hospital, Sarah passed her exams in 2004, shortly after she began dating her husband, Rob.
“When I first met Rob, I didn't think I wanted to complicate my life with the distraction of a relationship, but I soon realised what a stable and nurturing influence he is. He is just wonderful."
Sarah CoxPA Real Life/Collect
Then, having been told she would struggle to conceive, Sarah, who married Rob in 2011, fell pregnant in 2008.
“When I was 22, we decided we wanted a baby so went to talk to the doctors who said, 'Your disease is very active right now. Maybe wait and see if it settles before trying to get pregnant'."
“But this is a progressive disease, which means things can also get worse, so we decided to go ahead – and James was conceived."
Monitored weekly, by the time she was 36 weeks into her pregnancy, the doctors told Sarah the strain it was putting on her heart and liver meant the baby needed to come out right away.
“We had always had a plan with the doctors, knowing our baby might be premature, but he weighed 7lb 4oz when he was born healthy, fit and fine. I just felt so lucky and so blessed."
She continued:
“I loved every minute of being pregnant, but having a new baby was a shock, as it is for any new mum."
“The big difference for me was that I had to get him used to being looked after by family members when he was just a few weeks old, because I was in and out of hospital myself."
Sarah CoxPA Real Life/Collect
Sarah's condition continued to worsen and, aged 24, she had her first operation.
**GRAPHIC IMAGES FOLLOW
Initially, medics only needed to remove the odd fingernail, following infection to the surrounding tissue, which Sarah said felt like a shard of glass being stabbed into the nail bed.
“I had so many emergency trips to A&E in the dead of night. The pain is so bad, I promise you, that you would amputate your own fingers just to make it stop."
Sarah CoxPA Real Life/Collect
She explained:
“Nail removal is barbaric. My brother came with me to hospital and watched the procedure. He had to go outside and vomit. But you will do anything to stop that pain."
Sarah CoxPA Real Life/Collect
Scleroderma can also cause the blood supply to the fingertips to be cut off, meaning the tissue itself dies.
When this started happening to Sarah, she knew parts of her fingers would have to be surgically removed and, in January 2013, she had her first amputation, taking away a finger.
“I had a huge dressing on my finger, which I didn't want to remove. I didn't want to see it."
She added:
“The first time I saw it I was shocked more than anything, but I soon remembered the desperation I'd felt before and quickly adjusted."
Sarah CoxPA Real Life/Collect
She continued:
“I've had so many amputations now – a lot of which I've watched the surgeon doing – that I've become desensitized."
“As awful as it looks, I've come to accept it. I've had the same hand surgeon for years and now I tell him when it's time to take another part of the finger off."
As if this was not enough, in 2014, Sarah was diagnosed with interstitial lung disease – scarring and thickness of the lungs – leading to her feeling breathless when she walks.
Sarah CoxPA Real Life/Collect
“I use an electric wheelchair, because I also had my little toe on my right foot removed in October 2017, which affects my balance."
Sarah CoxPA Real Life/Collect
She explained:
“I can walk a bit and try to when I can, but I also have to use oxygen when I move around, because of the damage to my lungs."
“My circulation is shocking and getting worse and I have been warned by orthopaedic surgeons there might be a risk of below the knee amputation if the disease continues to progress. I keep my spirits up by telling myself that I still have a lot to live for, my family more than anything else, and as long as I keep adapting, I will be fine."
In fact, Sarah's whole family has learned to adapt. As she can no longer chop vegetables, she buys frozen ones and husband Rob helps her to get dressed each morning.
“James will lace my trainers for me, too. I do need quite a lot of help now, but we've grown together as a family through this and it's amazing how you can adapt!"
Sarah remains determined to do as much with her life as she possibly can.
Sarah CoxPA Real Life/Collect
She continued:
“I have always said you need to live your life to the full. I plan things to look forward to all the time, even if it's just a meal with family or a coffee with friends."
“We do our best to go on holiday whenever we can, spending quality time together, in between all the drama that comes with my health condition."
“I've had some horrendous lows, so we try to balance this by making as many happy memories as we can."
PA Real Life-Sarah Cox-SRUK
Sarah's biggest fear is leaving son James without a mum if anything happens to her.
She said:
“Hopefully, I will keep on going for years yet, but I do worry about him."
Sarah, who has recently undergone a six-month course of chemotherapy in a bid to alleviate the symptoms of her Scleroderma, now campaigns to raise awareness of unusual disabilities and works with the charity Scleroderma and Raynaud's UK (SRUK).
Sarah CoxPA Real Life/Collect
She said:
“I spend a lot of time being stared at, because I look different. Sometimes, I want to wear a T-shirt that says: 'Just ask, instead of staring'."
“I am now working with my local NHS Trust to create more awareness of the fact that disability doesn't just mean someone in a wheelchair."
“There are lots of unusual disabilities, like mine, and if people were better educated, I think they would feel less intimidated when they come across people like me."
For information, visit www.sruk.co.uk
