Mother, 32, has 30 amputations in six years to slice off parts of her fingers and toes because of conditions which reduce her blood circulation

May 23, 2019 22:41

A mother has told of how she has needed 30 amputations in six years due to a host of debilitating diseases.

Sarah Cox was diagnosed with an aggressive form of Raynaud's disease, which cuts off the blood circulation to her hands and feet, when she was 17.

The 32-year-old also has scleroderma and lupus, two conditions which cause the immune system to destroy healthy cells.

She has been forced to have most of her fingers and a toe amputated and was medically retired from her job as an emergency call operator with the police in 2011.

Mrs Cox, from Kingswood in Bristol, was told she'd likely never have a child because the stress of pregnancy on her organs could kill her.

But the defiant mother went on to marry, join the police force and have a child.

Mrs Cox said she's always refused to see herself as a victim and modestly claims she is simply 'adaptable'.

She 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.'

Recalling her schooldays, Mrs Cox, 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.'

In patients with lupus the immune system attacks the body and can cause serious damage to organs including the lungs and kidneys.

As soon as she was discharged, Mrs Cox returned to school to study for her exams.

When one of her teachers told her nobody would think less of her if she dropped out to prioritise her health, she replied: 'I'm going to get my A levels, watch me.'

True to her word, despite numerous stints in hospital, Mrs Cox passed her exams in 2004, shortly after she began dating her now-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's just wonderful,' she said.

Then, having been told she would struggle to conceive, Mrs Cox became pregnant in 2008.

She said: '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, doctors told her 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,' she added.

'I just felt so lucky and so blessed. I loved every minute of being pregnant, but having a 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.'

Mrs Cox and her husband, 34, tied the knot in 2011. But the mother's health continued to deteriorate and by the age of 24 she had her first operation.

Medics had to remove some of her fingernails, following infection to the surrounding tissue.

Mrs Cox said the pain was like a shard of glass being stabbed into the nail bed.

She added: '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.

'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.'

Scleroderma can also cause the blood supply to the fingertips to be cut off, meaning the tissue itself dies.

When this started happening, Mrs Cox knew she'd need to have some fingers amputated. In January 2013, she had her first finger removed.

'I had a huge dressing on my finger, which I didn't want to remove. I didn't want to see it,' she said.

'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.

'I've had so many amputations now – a lot of which I've watched the surgeon doing - that I've become desensitised.

'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.'

In 2014, the mother was hit with another setback.

She was diagnosed with interstitial lung disease - scarring and thickness of the lungs - making her breathless when she walked.

'I use an electric wheelchair, because I also had my little toe on my right foot removed in October 2017, which affects my balance,' she said.

'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.'

But Mrs Cox remains positive and said the entire family has adapted to cater to her needs.

As she can no longer chop vegetables, she buys frozen ones and her husband helps her to get dressed each morning.

She said: '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.

'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.'

But her biggest fear is leaving son James without a mother if anything happens to her.

'Hopefully, I will keep on going for years yet, but I do worry about him,' she added.

Mrs Cox, 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).

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.'

Systemic sclerosis, also known as scleroderma, causes hardening of the skin, which can also damage internal organs

Lupus is a long-term condition causing inflammation to joints, skin and other organs.