Six years ago, Jane Knight was just another of Britain’s army of multi-tasking women: a devoted wife and mother who frantically balanced looking after her family, including an autistic son, with her work as a complimentary therapist.
But today, the 47 year-old is a triple amputee, having undergone operations to remove both her legs and one arm. She faces the prospect of losing her remaining arm in the near future.
The cause of such devastating physical disability is not an horrific accident or advanced cancer but a condition that affects more than three million of us: diabetes.
Furthermore, as Jane acknowledges, her situation could have been avoided had she done more to keep her blood sugar levels under control.
Her story is a harrowing reality check to those who fail to understand how uncontrolled diabetes can cause wide-ranging health complications ranging from loss of sight, damaged kidneys, heart problems and even amputation.
‘Diabetes is a condition that has to be respected otherwise the implications are horrendous,’ she says. ‘It was only when I became pregnant with my son, almost 20 years after first being diagnosed, that I realised how vital it is to keep the condition under strict control. Unfortunately by then the damage had started.
‘I don’t want anyone to feel sorry for me. I just want people to learn from my situation. When I hear of teenagers skipping diabetic clinics or adults who think that because they feel all right they can just ignore their condition, I want to scream in frustration. I want them to shout: “Look at me and see what diabetes can do. Is this what you want?”‘
Alarmingly, Jane’s situation is not unique.
It’s thought that there are around a million people with undiagnosed diabetes ignoring warning signs such as wounds that fail to heal and tingling sensations in their limbs. And that’s aside from the two million or so who have been diagnosed with the condition.
Every week in the UK around 100 diabetics lose a limb because poorly managed diabetes leads to nerve damage, a side-effect known as diabetic neuropathy, and also restricts blood flow to the extremities, making it harder for wounds to heal.
Left untreated, within just weeks even a minor foot injury, such as a blister, can lead to infection and gangrene. In many cases this occurs when sufferers simply don’t give the condition enough respect labelled by psychologists as diabetic denial.
‘One moment sufferers are living an ordinary life and the next they’re being told they have a chronic disease that, if not managed properly, could lead to blindness, amputation and many other horrific complications,’ says Dr Brian Karet, Chief medical officer for primary care for Diabetes UK.
‘But since it has no immediate physical effect, they go into denial.’
There is, he adds, no set demographic for those who react this way.
‘I’ve seen it in young, old, men, women. I’ve known company directors who run huge organisations and yet ignore the problems diabetes can cause and carry on eating and drinking too much and putting on weight, while ignoring high blood sugar readings. The complications are catastrophic so it needs to be respected.’
Jane was diagnosed with Type 1 diabetes at the age of ten. She had been feeling unwell for several weeks, lost weight and was lethargic, when a urine test confirmed she was diabetic.
Diabetes develops when the pancreas either stops producing insulin or its output drops sharply. Insulin helps mop up excess sugar in the bloodstream. There are two types of diabetes.
Type 1 – which affects 15 per cent of all diabetics – tends to strike young people and happens when the immune system starts to attack healthy tissues such as the insulin-producing cells in the pancreas.
Type 2 diabetes usually happens in later life and is linked with obesity and a sedentary lifestyle – although spiralling rates of obesity in children have led to an unprecedented explosion in this form of the disease, too.
But regardless of the type, the risks and side-effects of both conditions is exactly the same – which is why they both need close monitoring.
After her diagnosis Jane was immediately referred to the Children’s Hospital in Bristol where she spent a week learning about injecting insulin – once a day, every day – and how she and her mother could control her diet through regulating carbohydrate and sugar intake.
‘One moment I was just a normal kid who loved sport and going to Brownies. The next I was in hospital practising injections on oranges.’
‘When I hear of people skipping diabetic clinics, I want to scream in frustration: “Look at me and see what diabetes can do. Is this what you want?”‘
Meanwhile she was supposed to keep an eye on her blood sugar levels by putting a special litmus dipstick in a sample of urine – the resulting colour would tell her how high or low her blood sugar was.
Jane says she tried to eat sensibly and her mother made healthy meals but she found her condition hard to control. Normal blood-sugar readings should be between 4 to 8mmol/l – Jane’s regularly hit 20.
‘I felt the need to prove myself all the time – that I was normal – so I carried on doing ballet, hiking club and badminton with my friends. The problem was that I didn’t want to have hypos – when blood sugar plunges and makes you dizzy.
‘As a result, Mum and I agreed that if I was doing something strenuous I’d just eat family-sized bars of chocolate. My blood sugar was sky high as a result but since it didn’t cause any immediate symptoms we thought it would be OK. With hindsight that’s ridiculous, but there was very little information around in those days.’
In fact, managing diabetes like this can lead to catastrophic long-term damage.
‘The bottom line is that sugar is toxic to the lining of the blood vessels,’ explains Dr Karet. ‘It produces nitrous oxide which creates irregularities in the arteries, roughening them up, which in turn attracts plaque. And this is what blocks the blood flow over a period of years. With less blood to nourish tissues, sores and cuts are hard to heal. Just a minor injury can become seriously infected, even leading to gangrene.’
But Jane was blissfully unaware of this. When she finished teacher training college she decided to open a boutique.
She thought running her own business would make it easier to work around her condition but relied on on sugary drinks to keep going.
‘I was supposed to keep a record of the results of every blood-sugar test I did so I could show the hospital.
‘But often I’d forget to do this and I’d sort of guess them and write them down the night before an appointment. I was young and naive – there’s no other excuse for it.’
At 29, Jane met Ian, an IT consultant, on a blind date and became pregnant with Thomas, now 17.
It was when she started on a family, that Jane finally realised the gravity of her condition. Doctors warned that diabetics have to extra vigilant during pregnancy – and for the first time Jane took heed.
From then onwards, and throughout pregnancy with her second son, Alex, now 15, Jane started to monitor diabetes religiously. She went for check ups at a diabetic clinic every six months, and cut down on sugary drinks and chocolates. But it was too little, too late.
In August 2004, Jane noticed a small cut on the ball of her right foot. But because of the damage already done the nerves, she hadn’t felt it at first.
To compound the problem, years of diabetes and high blood sugar levels had damaged her blood vessels restricting circulation, which meant the cut would not heal.
‘I started to get shooting pains in my right leg. I went to my GP who, because of my condition, referred me vascular surgeon, to check blood flow in my arteries.
‘Unfortunately he didn’t get that far. They couldn’t find a proper pulse in my leg. Then they saw that my little toe was turning black.
‘I had thought it was just bruised – but actually it was gangrenous and the tissues were dead. I was then told it would have to be removed,’ she remembers.
‘I was shocked. I knew that this was a risk of diabetes but I thought it was extremely rare. Of course, it was horrific being told I was going to lose a toe but I had to come to terms with it. I rationalised that at least it was only a toe.
And it was a warning; this was what could happen if I didn’t look after myself so I resolved to try even harder to keep up the tight control.’
But this warning came too late. By now the infection was spreading into Jane’s foot and up her leg.
‘After the toe was removed I developed a big blister on my foot that wouldn’t heal. It was agony. I went back and forth to the hospital but there was nothing they could do; the tissue was on its way to turning gangrenous. My consultant told me I would lose my leg.
‘Being diabetic comes with a chance of staying healthy. But I’m afraid I learned that lesson too late’
‘You’d think I’d have been screaming hysterically but I wasn’t. I simply wanted this gut-wrenching pain to stop. I didn’t start asking myself what if my control had been better. I had horrific surgery to face and that was all I could think about.’
Surgeons removed the leg up to the knee, and Jane was in hospital for five days. Six weeks later she received a prosthesis, slowly learning how to walk again. Family and friends rallied round to help with her children while Jane continued to meticulously monitor her condition.
Then, two years later, in early 2006 she noticed that her left foot had started to feel numb while her podiatrist noticed a black blotch the size of a 10p piece.
In view of her history, she was referred back to surgeon David Mitchell who broke the news that only amputating my leg could stop the gangrene.
‘Ian and my friends were fantastic, and I really pushed myself to do what I could in a wheelchair. Though sometimes I’d find it hard to put on a brave face. I remember going to the beach with the children and having to sit on the promenade in my chair while they scampered across the sand. I so wanted to be with them.’
Carefree: Ignoring her condition when she was young cost her limbs
And there were more challenges ahead. A few months later her kidneys started to fail and she had a kidney transplant last February.
Persistently raised blood-sugar levels can cause damage in the tiny blood vessels, stopping them filtering out toxins. Then, about a year ago – Jane’s worst nightmare came about.
She suffered a cat scratch that would not heal on her right hand, despite countless antibiotics. Slowly, the infection spread up her arm and another amputation was required.
‘This time it was so much worse than my legs. This was my writing hand. And I loved to paint, sew, play the piano.
‘That familiar tingling and numbness has now started in my left hand and my eyesight is also diminishing.
‘I know that sometime in the next year I’ll lose my hand and that frightens the hell out of me. I’m trying to mentally prepare myself for that. Of losing all my limbs.
‘But how do you psyche yourself up for that? I have been controlling to the point of obsessive about my diabetes. If I have a bar of chocolate once a year then that’s a splurge for me. But sadly it’s not enough to halt the damage.
‘People ask how on earth I go on, and the answer is that I simply don’t know. In a strange way the demands of being a mother and the fact my boys still need me, in what ever way I can manage, makes a difference.’
Carers help her dress and shower and she has prosthetic aids for her arm to help her do normal things.
‘Of course I do think “why me”, though in practical terms I know why. Getting Type 1 diabetes was something that happened to me and I had no control over that. But I know now – to my eternal regret – that I shouldn’t have waited so long to rein in my diabetes and to take such hard line control. And that tears me up.
‘Being diabetic comes with a chance of staying healthy. But I’m afraid I learned that lesson too late.’Tags: amputation, amputee, blood sugar, diabetes, diabetic, diabetic neuropathy, insulin, Jane Knight, pancreas