My 40th diaversary story. Karen Addington, CEO of JDRF UK

CEO of JDRF in the UK Karen Addingtonj talks about 40 years with type1diabetes

This diagnosis story is my attempt to explain why I work in type 1 diabetes research. This story is why I support JDRF. This story is why I fight for better treatments, for prevention, and for a cure for type 1 diabetes.

No child should ever have to go through what I did – or worse – at diagnosis. Children are still misdiagnosed and lost to DKA, even in this country, even today, despite our scientific developments, and with everything we know. I am outraged.

Children die of a lack of access to insulin in developing countries all the time. I am heartbroken. If my story helps inform just one person, saves just one life, it’s worth telling.

In 1979 I was just a child, so some of my memories may be hazy, but they are my memories and they remain with me today.

I remember that for several weeks I had been thirsty, peeing a lot, and so unbelieveably tired.  I was a sporty child; I was in the school netball, hockey, gymnastics and swimming teams, but I remember not being able to play as much, or enjoy my sport.

I was terribly thin; we had to weigh ourselves in rural science class (no idea why we were weighing ourselves, does that subject even still exist?) and I weighed just 21 kilos.  I remember my teacher commenting that 21 kilos was not a lot, but I don’t recall anything ever being done about that.

The weekend of my diagnosis is seared in my memory, despite my young age. I was very unwell, but I was due to go to a football match in Bristol with my family, so off we set.

I remember feeling awful, but it wasn’t until I collapsed in the street that my parents realised that something was terribly wrong. I was taken to A&E at Bristol Royal Infirmary, where the doctors told my parents it was likely I had glandular fever. I was sent home to rest and recuperate.

We went home to Worcestershire that evening and as we drove I was falling into a coma.  I know that I was hallucinating. I am not religious but I remember seeing Jesus that night, and he was welcoming me.

Terrifying

When I breathed in I was more lucid, but with every breath out, I fell further into the coma. I wonder now if that’s a recognised medical thing, or if it was my imagination – my memory playing tricks on me over the intervening years. In either case, it was terrifying.

When we arrived home I fell into bed. My father, still worried, fetched an elderly, retired but trusted GP, who was to be found every evening in the local pub.  He came to see me, and immediately identified the distinctive whiff of pear drops on my breath, indicating ketones.  He ordered my father to drive me straight to hospital, not to wait for an ambulance.

There wasn’t time, he said, he was certain I had diabetes, and I was likely to die waiting for the ambulance to make the return trip from the hospital out to rural Worcestershire. I remain so grateful to Dr Bernard Dawes.  He must be long gone now – he was very old even in 1979 – but I owe my life to that rather drunk, long-retired GP.

I don’t remember arriving at the hospital, nor do I remember being admitted.  The next thing I recall was waking up the following day in the intensive care unit with a drip in each arm, desperately thirsty, hungry, and completely confused.

I also don’t remember any family being there when I came round – I think hospital visiting hours were enforced quite rigidly in the 1970’s and certainly there was no facility for parents to stay in the hospital with their child.

There was a terrible moaning sound when I woke up, which persisted for the entire week as I remained on the ward. In the bed opposite me was a very sick boy who was hooked up to lots of machinery.

I don’t remember any pain, just feeling sad, lonely and confused.  It was quite a while before anyone told me what was wrong with me. I wasn’t allowed to eat for the first few days – the nurses apparently wanted to get my glucose ‘under control’ before I could eat anything.

I was so hungry.  I remember the food trolley coming round and the other patients being served in front of me.  Even 1970’s disgusting hospital food seemed delicious to me; I would have eaten anything!

The nurses were so lovely. I caught a stomach virus while I was in hospital, and I remember one nurse in particular who put her hand in the centre of my back as I was vomiting. It’s such a comforting gesture when you are throwing up, and I do it now for my own children.

It made me feel less vulnerable. She spoke to me as a person, not a child. That meant so much to me in a ward where the doctors stood at the end of my bed talking to medical companions, but not to me.

A nurse told me I needed to have injections and that I should learn how to do them myself.  I was given an orange to practice on and a huge glass syringe with a long metal needle.  I said I didn’t mind injections while I was ill, if the injections would make me better.

It was several days before anyone told me the injections were forever. I clearly remember my 12-year-old horror in that moment.

I still hate the smell of insulin. For me, it is the smell of everything changing forever, the end of my childhood.  I can’t stand the smell of urine either.

Believe it or not, the facility to test blood glucose didn’t arrive until the mid 1980s, so to get an idea of my levels several hours earlier, I had to pee on a strip several times a day, every day. Just yuck.

Strict regime

I was sent away from hospital with a strict regime, and I stuck to it rigidly until 1986.  Seven years of eating 180 grams of carbohydrate at precisely the same times every day, hungry or not.

I got up at 7am every day for seven years to consume 50 grams of carbohydrate for breakfast, even at weekends and when on holiday. I ate three 50-gram meals a day, even when I wasn’t hungry, even when food was the last thing I wanted.

In 1986 everything changed, when I went to live and work in Spain. I quickly realised that I couldn’t follow my usual regime, it was just impossible.  The Spanish timetables for meals aren’t similar at all to the regime I had in the UK, and their food is completely different.

I had a couple of severe hypos while I was there, and even ended up in hospital once; but my goodness, as a result of being forced to reassess how I managed my condition alone, I more or less invented an early version of MDI for myself, long before it became the norm.

I remain, however, so grateful to the NHS for saving me.  I am still grateful to every single doctor and researcher who has delivered improvements over the years, to enable me to manage my condition better, more accurately, more safely.

I am even grateful to the doctors who spoke harshly to me at the time of diagnosis, those who told me I would never be able to have children, must never wear high-heeled shoes, could never travel.  They were giving me the advice they believed would keep me safe.

Fortunately they were wrong; diabetes care has developed beyond their imaginations and I have done all of those things they told me were impossible in my life.

So, this is why I am celebrating, not regretting my 40th diaversary today. I am grateful that I have survived, and thrived. I’m celebrating having enjoyed a fulfilling and challenging life and I’m optimistic and positive about the future with type 1 diabetes.

Managing my condition has become easier and easier over the past 40 years, as insulins and type 1 technology have improved beyond anything I could have imagined all those years ago. And one day – I truly believe this – the continued research and development will lead to the one thing that all of us want. A cure for type 1.

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