INNODIAParticipant Spotlight

Real life experiences

Diagnosing Diabetes: Helping patients from 1921 to 2021

6th of April 2021 by Sofie

It’s been just a few weeks since Sofie was diagnosed with type 1 diabetes, an autoimmune condition, at the age of twenty-four. Less than a month later, she has become only the fourth person in Belgium to participate in a clinical trial for newly diagnosed patients, conducted by research group INNODIA. Type 1 diabetes has changed her life immeasurably. This is her story...

'Can you check my blood sugar?'
“No Sofie, because you don't have diabetes!”

It’s a Saturday evening in January 2021 when I ask my younger brother, who has had type 1 diabetes since he was ten years old, to check my blood sugar level. I'd been feeling thirstier lately – a classic symptom of the disease – so I guess I thought it couldn't hurt to check. My brother rolls his eyes at me. He knew I tested my blood sugar regularly – just a sensible precaution with so many other diabetics in my family. But my results were always normal. Why would this time be any different?

'You don't have diabetes Sofie,’ he says, teasing me gently. ‘You just want attention!' To be fair, it seems like he’s right. I have no other symptoms. Except for excessive thirst. Oh, and fatigue. My older sister, who has also suffered from the disease since she was ten, is more cautious. She suggests that I use a urine test strip to check my glucose level. My brother and sister use them all the time – I’ve used them myself too. My strip has never changed colour before. But as I sit, watching my strip slowly turning a dark, ominous, green, I know exactly what it means. Fourteen years after my brother and sister were diagnosed with type 1 diabetes, it’s my turn.

A new life

Green signals new life – but not the kind of life I ever wanted. In shock, I run over to my sister, who grabs a needle and a test strip. The result reads '450'. I start to cry. I’ve always known that I was at risk, always lived with the possibility that I’d be next. But while the disease has been looming over me like the Sword of Damocles all my life, I was clearly not ready for the blade to fall.

Knowing what this disease does, having watched its impact on my family for so many years, only makes it worse. 'I’m so sorry Sofie,’ my sister says, ‘I really thought you would have developed it by now if you were going to get it at all. I thought you were safe now.’ Until today, I would have agreed. Diabetes must have skipped me, surely? Or else I would have got the disease at the age of ten – that cursed age – just like my siblings, right?

I have come to realise how lucky I am that my brother and sister have paved the way for me. As old hands, they were quick to respond to the shock with humour, our family’s way of comforting and supporting each other.

'Now you're finally part of the club!,
my brother says, laughingly.

On holiday at the UZ Leuven

Two days later, Monday February 1, 2021, I am admitted to the University Hospital of Leuven. It's already late, because I had to wait for my COVID-19 test to come back negative. When we finally get to the hospital, it almost feels like a holiday. Everyone is extremely kind, and their gentle banter and laughter feels like medicine.

Plus, I get breakfast in bed! I also get a lot of information. Because I grew up with the disease around me, I know how things work in general. I know what insulin is. I know that my immune system is malfunctioning, attacking and destroying the insulin-producing cells in the pancreas. I know that when you have a hypo your blood sugar is too low and when you have a hyper your blood sugar is too high. I know you have to eat healthily and count carbs. And of course, I know how much of an impact the disease has.

'I feel completely unprepared. There's no way you can understand until it happens to you.'

And at the same time, I know nothing. In a grim twist of fate, it’s sixteen years to the day since my sister’s diagnosis. Sixteen years of watching as my siblings learn live with this deadly illness, and yet I realize I still feel completely unprepared for the emotional impact. There’s no way you can really understand until it happens to you.

It’s been 100 years since insulin was discovered in 1921, a discovery that has saved countless lives. A lot has changed in a hundred years, and thankfully treatments are improving all the time. Take my aunt, for example. She was diagnosed with type 1 diabetes at just one year old (the 'club' is a real thing in my family) – and at one point even had to inject herself with porcine insulin. And while my brother and sister had to prick their fingers when they were first diagnosed, I was able to use a sensor to measure my sugar levels right away.

Diabetes treatments of the future

But the medical revolution is not stopping any time soon. While a hundred years ago type 1 diabetes was a death sentence, today there are countless clinical studies trying to cure, prevent or slow down diabetes. During my hospital stay, a team from INNODIA , a European-wide research initiative on type 1 diabetes, visit me. They tell me that there are two studies I can participate in. One is attempting to prove the efficacy of the study drug IMCY-0098 in type 1 diabetes. The other is the MELD-ATG trial. Aimed at recently diagnosed young adults, this study is investigating the minimum effective dose of anti-thymocyte globulin (ATG). ATG is a drug that can help stop the immune system attacking and destroying insulin-producing beta cells. It is made from a collection of antibodies – this time not from pigs but from rabbits.

A different kind of research

On Thursday 4 February I get to go home. I am relieved and a little scared at the same time – it’s been just three days since I was admitted to hospital. Now it feels like I really have to face this on my own – although with my brother and sister around, that's not entirely true. On the first evening, when I accidentally inject my slow insulin into my stomach (where the fast insulin is injected) instead of my leg, I panic. My sister is there to calm my fears, assuring me that it’s no big deal.

Now that I have been living with diabetes for about a month, I cannot help but laugh at the panic caused by that mistake. It's true that you learn to put things into perspective quickly. For the first few days, my blood sugar is very stable. I weigh my food and count my carbs religiously. But I soon become a patient whose sugar levels are too high at times. I thought I would be a huge control freak, but when you have diabetes, that's almost impossible. The fact is that managing this illness, day in, day out, is not an exact science.

I like to leave the science to others, like the INNODIA team, who phone me on a Tuesday to ask if I have made my decision yet. Because both trials have to be initiated relatively soon after diagnosis – beta cell destruction can happen quickly – I need to make a decision. To be honest, with so much new information coming my way in the last few days, I have not read the information leaflets properly, but I still agree enthusiastically. I am currently finishing my PhD in Literature, and although this is a completely different field of study, I am aware of the importance of academic research. By participating in this study, I am now literally embodying these principles, as it were – doing my 'job' on a completely different level.

Gathering source material

As with literary studies, the first step in research is collecting source material. On February 15, I go back to the hospital for an initial screening. I have to fulfil certain requirements in order to be able to participate in the MELD-ATG trial. Thankfully, I am accepted and on March 2, I go in for a food test, where the researchers check how much my sugar levels increase after eating.

On March 3 and 4, it's finally happening: I receive the medicine, or a placebo, via an infusion. Again, I am treated incredibly well and my stay feels like a holiday. I was given pre-medication to counteract a possible reaction to ATG, but because the medicine is administered very slowly (the infusion runs for 12 hours on the first day, 8 hours on the second), the side effects should be very limited. So in the evening I am allowed to go home.

From 1921 to 2021

I sometimes think of my brother’s words, 'you don't have diabetes Sofie, you just want attention.' Lately, I have received more attention than ever. While I would not wish this condition on anyone, I am enormously grateful for all the support I have received. Both from my brother, sister and aunt, and from the University Hospital Leuven, its nurses, doctors, researchers and study team.

'I am both grateful, both for the discovery of insulin in 1921 and for the clinical trial that is being conducted 100 years laters'