For this episode of Karger’s The Waiting Room Podcast and with regard to this year’s World Diabetes Day on November 14, we spoke with Konstantina Boumaki about her patient journey and her work as a patient advocate.

Konstantina is a medical doctor with 19 years of experience in patient advocacy. Since her diagnosis with type 1 diabetes in 2005, she has been a passionate advocate, leading numerous projects to improve patient engagement and health outcomes. She is a board member of the European Patients’ Forum (EPF), a board member in the EPF’s Youth Group, Board Treasurer for the Hellenic Diabetes Federation, an active member of the International Diabetes Federation (IDF), a mentor in the IDF’s Young Leaders in Diabetes Program, and an active member in the Yourah project of IDF Europe.

Note: The statements and opinions contained in this podcast are solely those of the speaker.

Podcast Interview

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Transcript

Hello, Konstantina, and welcome to The Waiting Room podcast.

Hello, and thank you so much for inviting me. This is an honor and I’m looking forward to this conversation.

So do I, Konstantina. I will start right away with my first question, which is: When and how were you diagnosed?

I was diagnosed with type 1 diabetes in 2005 when I was 9 years old, in Crete, in a small island in Greece where no one knew what type 1 diabetes was, including my family. So, luckily my pediatrician had recently attended a seminar where he learned about the smell of ketones in breath during ketoacidosis which saved me from ending up in a coma at the hospital. And we went straight with the diagnosis to the hospital. For months leading up to the diagnosis, I was feeling very unwell. I was losing weight, drinking large amounts of water, and as a usual energetic child, I didn’t even have the energy to speak to my classmates, and their parents were asking if I was okay, what do I have.

But I didn’t understand what was wrong with me, so I didn’t know. And one funny memory from that time is related to my mum’s house rule. We could only eat junk food on Saturdays – one that we were choosing on Monday at the supermarket. I was diagnosed on a Wednesday. So, my biggest concern was whether I could still eat my chips on Saturday. And thankfully, my doctor said “yes, in moderation”. But it was the only thing I cared about. And that moment helped me approach my diagnosis with a more positive mindset. And, I’m really grateful for my doctor. He was not only my doctor, but my mentor guiding me and my family through those difficult times, especially at the start. And later pushing me towards the diabetes advocacy.

So, you were the only one in your family and obviously in your class at school. So, it was a new situation for everybody, for you and the people around you?

Yes. No one in my family did have diabetes. Not even type 2 diabetes. So we didn’t know what it was. And, especially in the school, in Heraklion generally, because, you know, back then, everyone was hiding it. So even if someone did have it, no one shared it. So even if someone was in school diagnosed, you wouldn’t know because no one would share this. No one would say, you know, my child has diabetes.

But did you tell people?

I did from the start. And my family played a huge role because they told me that you don’t have to hide it. It’s not something that you need to hide. You need to be aware, and your friends can help you if you have a “hypo”. My mum was really scared. Thankfully, like, you know, three years ago, I learned that she was crying upon my diagnosis, but she didn’t cry in front of me, so I felt, like, I was okay. And, I said it from the start, and thankfully my friends and my family, not only my brother and my parents, but my aunts, my uncles, our family friends, they weren’t judgmental. They were very open about it to learn.

My friends in school, they were using me to skip classes. You know, they said, oh, Konstantina has a hypo, so we all need to go outside and give her a juice. So, we were playing around as kids, but everyone was helping me. When I had a hypo, everyone would indeed come and help. And if someone didn’t understand something, they would come and ask me. And I wanted that. Yeah. Because with my best friend since, like, four years old, we discussed it. She knew me before I was diagnosed, and after my diagnosis, we were in the same class, but my elementary school was in the center of Heraklion with families that were, like, educated parents, not from villages. They were living years in a big town. A big town, like, for Crete, because it’s not a big town.

But when I was off school for two weeks, of course, her parents, my best friend’s parents did. [Addendum: Her parents sat down with her and explained that I am off school because I am in the hospital, I am diagnosed with something and I might need extra care but I am not fragile and she shouldn’t be scared of asking me anything. This was a great conversation that I had with her a few months ago because I had no clue and she told me that everyone’s parents from our classroom did the same and so did our teacher.] And I think for everyone in class, they sat down their child and told them, you know, Konstantina will have a disease now, but it’s nothing, you can, like, ask her. It’s not something that you need to be judgmental or avoid her, and after I came back, it was nothing, you know. It was, like, before. I didn’t feel any difference. And this played a huge role, especially in the early days.

You were really lucky that you had a doctor who was quick to diagnose you. You had people around you who didn’t judge you, and you could just go on living, a kind of a “normal life”, but of course you needed treatment. And this leads me to my second question. How were you treated initially and how did your treatment develop?

So, back then, I was treated with a mixed insulin system, using syringes and an old glucose meter that took 30 seconds to show results. But it was standard for that time in Crete. And, you know, this meter, this glucose meter would take 30 seconds, and I would leave it there to show my blood glucose result. And then I would forget about it, and it will switch off the screen, and I couldn’t open it because it was, like, I just saw the results and then it was gone forever. So, I needed to redo it. But at least I had a glucose meter, you know.

And a glucose meter meant you had to draw blood in your finger? So, you had to hurt yourself again to get the results when you forgot to look at it.

Yeah. There were no CGMs back then, no CGM. And with this mixed insulin system, I had to follow a strict diet, eating specific grams of food every three hours. And I was very thin. So this was very hard to follow because I wasn’t hungry, but I needed to eat every three hours, and thankfully I was a routine-oriented child, so I adapted well in this routine. But, of course it had the ups and downs. Of course I had eating disorders, because I didn’t even like sweet things, desserts, and I still don’t. But back then, because they said, you can’t have that, like, you can’t have it every day, my mind, like, changed, or, I know now that I wanted to eat my whole food because of this pressure, the early days that you need to have to eat it all because it’s specific grams. You need to eat it all.

Eating was not a pleasure? It was just something that had to be done and a special amount for a special time? And not just, like, oh, I crave something or I would love to have this chocolate or ice cream. So, you just were on a strict schedule.

Yeah, exactly. And then, as I grew older, I switched to insulin pens. And then in 2011, I requested an insulin pump. And I was having every night hypoglycemia. Like, this was whatever we would do, and even with the mixed insulin or with the pens, I couldn’t avoid the nighttime hypoglycemia. But the pump was a lifesaver for that. And when I had it, I slept through the night peacefully, which was life-changing. I really loved that. And, over time, I tried continuous glucose monitors, CGMs, though the early versions were very annoying. A nightmare with the notifications; they had many inaccuracies. So, I tried it in 2013, then I stopped it, and I tried one in 2017 again, but then had many inaccuracies.

So, I thought that I could do it on my own. But now I use a closed loop system that changed the way I was thinking. You know, before, I had to control everything. I had to feel if I was hyper or if I was hypo. I had to calculate exactly how much grams or units will I use for the specific food. But now with this closed loop system, I gave a little of my control, but it gave back some time of my life, you know, some time for my everyday life and a peace of mind, which I really, really do love. Love it when it works. Because I have, like, issues with that, too. But even though it’s not perfect and Greece still needs better quality supplies, it has improved a lot my quality of life.

I will remember the point you mentioned “sleeping through the night”, because I think this actually does something for your mental health as well. But we come to this later, and what you just mentioned, the development in Greece. But how have you seen the global landscape of diabetes care change, particularly in terms of access to technology and treatment? You come from a small Greek island, but now you have seen a lot. And what changes have you seen?

When I was diagnosed, my doctor said, like, don’t worry, in five years – back then – we will have a solution to diabetes. But I feel yeah, he’s saying that to every child that he’s diagnosed. They give them, you know, like, purpose, only five years of hard work.

You can do this. Be strong. It’s only for five years.

Yeah, but now when you see it, these technologies really help you a lot, living – I would say I hate this word, I hate this, like – a “normal life”, but of course it’s not normal, it will never be normal. But it gives you a peace of mind, like, it gives you back some of your freedom, which I didn’t have in the early days.

It allows you to forget about it for a certain time or not think about it constantly.

Yeah. Yeah. Because it is a fulltime job, you know, this is a fulltime job and not a work that you switch off your laptop at 4 p.m. and then you go home. It’s a fulltime job 24 hours per day, 7 days per week. So, these – you can’t have 30 minutes “no I will not do that”. But you can have some time per day to just sit and not think about it, especially during nights, which was my worst. Personally, it was my worst thing. I would, like, have a hypo, waking up every 30 minutes or, like, it was a nightmare. But now I sleep through the night and it’s perfect.

We will discuss it after, but anyway. So there have been significant advancements in diabetes care, and CGMs, insulin pumps and the more personalized treatment plans are some of those. But the access to these technologies isn’t equal, even in wealthier countries. The prices are overpriced, anyway, it’s, like, the inequality is huge. But in wealthier countries, people can benefit from these innovations, but in underrepresented areas, many still rely on older and less effective methods to manage their diabetes. And I’m not saying, because I know some people that still use the mixed insulin system, which was, like, my first treatment, and they are succeeding. It is the best treatment for them.

Each person, though, is different, and each person needs to have the choice to say in my everyday life, the mixed insulin system is the best for me. Well, congratulations, please use it. But to some others, the pump, like, me, I had everyday hypoglycemia. I need the pump. If I was born in a different country then I wouldn’t be able to sleep through the night. And this is sad. It’s unfair. It’s unfair. Why should the country choose the quality of life that we have?

So, I skip to the next question and ask you, is this the reason why you became an advocate?

So, the reason – the pump, you mean? I think because I was born in an island that no one knew what diabetes was. And I have the justice character in me. So, I’m a fair person. I hate when someone is unfair or, like, someone is lying. I need to be, like, with the rules. Okay, this is annoying sometimes, but I am a person like that. So, I felt that it’s not people’s fault that they don’t know. I didn’t know what diabetes was when I was diagnosed. Why should they know? So, I felt that this is my job, because now I know. I can spread awareness. I can raise awareness. I can, like, give this knowledge to someone because they might use it afterwards to someone else.

And, my doctor, my local association, and my parents were the key reasons I became an advocate, of course. And the discrimination when you were growing up in this small town. Everyone was saying that you’re too young to have diabetes, you’re too thin to have diabetes. These stereotypes. And after some time, you know, you’re starting to rethink, like, am I too young to have diabetes? But as I said before, it wasn’t their fault. So you need to put it straight, you know, to say it, that, you know, “I have type 1 diabetes”.

Even if I don’t look like it – you just have it, and that’s a fact. And so you fight for equality or equal access. You want people to have the choice which system works best for them because you experienced how choice changed your life.

Yeah, I think it’s the number one priority, but not the only one. Because in Greece you still have the stereotypes and the discrimination. So, a huge amount of time with my advocacy work is dedicated to that.

And you do the advocacy work, you are a doctor, you’re a medical doctor. And so you have a day job and you have the advocacy work on top.

So, I am a medical doctor, but the advocacy work is my love. I work in a patient organization for now. And I really love this. I was doing it voluntarily for so many years, and I think that this – not way – but this side of the coin is what I love. And as a doctor, I have a different perspective.

I would like to come back to the topic of mental health. You mentioned sleepless nights and how it made your life better. So how does diabetes impact mental health? And how can health care providers better address this aspect of well-being? What do you think?

So, diabetes and mental health are deeply intertwined. Research shows that many people with diabetes experience anxiety, burnout, depression, and not just because of the constant need to manage their blood sugars, but also due to the stigma, the discrimination, the stereotypes they face daily. And a big part of the struggle, also in my case, of course, is the loneliness that no matter how many people surround you, it can feel like no one truly understands what you’re going through. So, for years, I kept people at a distance because my everyday life with diabetes was so difficult to explain. And it’s only recently that I’ve started working on breaking down that wall.

And it’s important for people with diabetes to prioritize their mental health and accept that their diagnosis is life-changing. Mental health support should be part of diabetes care. Priority. Because this is a trauma that changes your life, your relationships, and how you view the world. And it is a trauma that you need to accept it. You need to work on it and then move forward. No, not move forward, because it’s like you don’t forward but you need to, like, to heal and continue with it, to live with it.

So I see that you are or you will obviously always be on a journey, but I can see that your journey is leading you to a better life, to a healthier life. You know more about yourself. The diabetes treatment has changed. So, can we say that you’re looking at a bright future?

Yeah. You know, like, I think that diabetes gives you so many lessons, and I will not wish that to anyone. And I’m not saying that I’m thankful. I wish, you know, like, I didn’t have it, but I have it, and I’m thankful because I was a more mature child. I know myself more. I am independent since a very young age, taking control of my health. And these things led me to be who I am today. And I love who I am today. And I feel, like, not only my work in advocacy, but also the person that I have become with diabetes, it’s a nice person, you know.

Let me come to my last question now. And this is: What do you wish for every newly diagnosed patient? And what would you and your family have liked to know when you were first diagnosed?

I wish every newly diagnosed patient had access to support – including mental health – resources, and peer networks. But I wish I had known from the start that there will be tough days with diabetes, and that’s okay, and it’s not my fault. There are so many factors that influence blood sugar levels, and sometimes things are beyond our control. And I also wish I had known that I wasn’t alone. Even when you’re surrounded by people, the loneliness of living with diabetes can be overwhelming, and finding a friend who also has diabetes was life-changing for me. My friend George from Crete became a lifelong friend, and we have a bond where we don’t need to explain. We just understand. And that connection is invaluable. Every person deserves access to the tools, education and community.

Thank you very much for the for these words to finish this talk with you. Thank you very much, Konstantina, and I hope to speak to you soon. Bye-bye.

Bye.