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Inside the Patient Entrepreneur’s Mind with Sigurjón Lýðsson

Sigurjon Lydsson

Having a chronic-illness can be challenging, and running your own business can be hard. No matter where you fit on the spectrum, we could all use a little motivation.  Our #InsidethePatientEntrepreneursMind blog series gives you insight and life hacks on how to stay motivated from some of the most innovative patient entrepreneurs in the world.

Sigurjón Lýðsson is the CEO and Co-Founder of Medilync, a medical platform which builds cloud-based medical solutions where big data, IoT, and engagement are key to alleviating the burden of diabetes.

Sigurjón sat down with Lyfebulb to tell us how his father’s medical diagnosis with T1D, cancer and his short term memory lost motivated him to look for a solution that would help his family and medical provider manage the care of his father.

What motivated you to create a business addressing a disease you know so well?
My father has had Type I diabetes for apporx 40 years now. When growing up we usually didn’t notice that he had T1D, he never complained about it. Captain on a shipping vessel with 8-10 souls he was told he couldn’t do it. He never gave in. In later years he started to show symptoms of memory loss. We, his sons, would joke about that and so did he. But when he was diagnosed with cancer and it had spread to his brain, we got ever so more worried. At that time he had forgot if he’d measured his glucose or even if he injected or not. So when we were told his tumor would affect his memory I started looking for a solution for my dad. I could not find it! I still can’t as I am still trying to get it funded. I know I have the solution, but I fear it will be too late for my dad. If I can help anyone else live a better, safer life then I will be happy.

What are some of the hurdles you perceive exist for people with your disease?
Diabetes is one of the toughest disease out there. But information flow in general is what is the biggest hurdle today. Information from patients to clinicians is too cumbersome and usually only verbal from the patient to clinicians. We have a solution that has changed that.

Who are some of your role models in your space?
Not necessary in my field but Juan Mata Garcia is my latest role model. Kind person to those who need it, gives 1% of his Manchester United income to others. Bill Gates is another one I admire. Using his wealth to find a cure for polio for example, is just amazing.

What is your goal beyond creating a successful business?
Help people live better and safer lives.

What does Lyfebulb mean to you? How can we support you better? What are some of the biggest gaps today for a “young” entrepreneur?
Funding a company doing a hardware for diabetes is really difficult so anything in that area would definitely help.

How do you stay healthy and motivated to deliver?
As I am 75% likely, due to genes, to get Type II diabetes I do take care of my nutrition and I do cross-fit 5 times a week. That gives me the energy I need to get ahead of the curb.

How has mentorship made a difference in your professional and personal life?
Mentorships are key to new companies to a difficult market.

How can we draw more attention to user-driven innovation?
Solely by involving the users more.

How do you maintain work/life balance?
I would always be lying if I’d say that I can control it, but I do my best.

If you had three wishes, what would they be?
I could create a legacy which saves lives 2) My family be safe from harm 3) Peace on earth ☺.

What is your favorite song that gets you motivated?
My own song Unity 😉


#InsidethePatientEntrepreneursMind is a weekly blog series that highlights members of Lyfebulb’s Patient-Entrepreneur Circle. The Entrepreneur Circle is an educational and inspirational platform for all people living with, or affected by chronic disease. Existing entrepreneurs will be available to educate new dreamers through the website and through live events. To read more or to apply to join the Enrepreneur Circle click here.

Real Talk With Dave: The Bright Side of Type 1 Diabetes

Hey there! Welcome back to Real Talk with Dave! This week, I wanted to talk about something that some may not always want to think about. First of all, in any situation in life, there is always something to be grateful for. When that concept is applied to Diabetes, for example, it may be hard to think of the positives over the negatives. However, there is so much to be grateful for and so much light amidst the darkness of T1D.

Last week, as I offered a giveaway on my Instagram, @type1livabetic, for my amazing followers, one of the requirements to enter in the giveaway was to comment on my photo one thing that they actually like about Type 1 Diabetes. After receiving many comments on the photo from different people living with Type 1 Diabetes around the world, it made me think about it and ask myself that very question. When I sat down and thought about Diabetes as a whole, there were many things that I was reminded of as to why Diabetes is a horrible thing on its own, but the more I thought about it, I remembered how many blessings have come from T1D in my life.

For starters, I was diagnosed when I was only 11 years old. Obviously, as a kid who was transitioning into becoming a teen, I felt like I had lost a big part of my life. When you’re only 11, it can be hard to think positively and think of things that you are potentially grateful for in your Diabetic journey. The last few years, though, I have really opened my eyes and saw the big picture of T1D. It was clear to me on what Diabetes really is. Diabetes is manageable and livable (that’s something to be grateful for, right?). Don’t get me wrong, there are some really hard days along the way, but despite that, we have the proper medication and treatment solutions to help ease the difficulty of T1D.

One thing that I have really enjoyed and that has brought me so much joy and support the last few years has been the growing amount of support in the Diabetic community. Lots of people had mentioned this when they commented on my photo with their own honest answers. We have all somehow formed a bond with each other, whether it be online or in person, where we all just get each other, all because of this one thing we like to call Diabetes. Who would have thought such a horrible disease could bring millions of people together for the greater good?

We have all somehow formed a bond with each other, whether it be online or in person, where we all just get each other, all because of this one thing we like to call Diabetes.

A few other things I personally enjoy about T1D would definitely be the responsibility it teaches you to have, the independence you’re given, and also the added knowledge you are given as a person. How many of you reading this have taken a test before where there was a question about Diabetes and you automatically knew the answer because, well… you have Diabetes yourself and go through it every single moment of your life (especially during that test!). It’s always good to know more about life and how we as humans work, so by having Diabetes, you are able to know more than you would have ever imagined.

Last but not least, the one thing that I can honestly say is the thing I love the most about living with Diabetes every day, every single moment of every day, and every big and major life event I go through is the gift of empathy. People have asked me what I feel I have gained from living with this disease and my go-to answer is simply… empathy! One of the coolest things in life is being able to understand how someone else may be feeling, maybe not exactly, but by having an idea of what they are going through, and being able to connect with them one-on-one, regardless of their situation. In my 9 years of living along side T1D, I have come across several people who go through different challenges, whether it be a health issue or just a stressful life problem, and being able to feel for them, as well as with them, and by knowing how hard it can be to go through something so bad is so good for the soul in which you can take time to stop and listen to each other, offering help and support, which in the end, that’s what we should do for one another, right?

In my 9 years of living alongside T1D, I have come across several people who go through different challenges, whether it be a health issue or just a stressful life problem, and being able to feel for them, as well as with them, and by knowing how hard it can be to go through something so bad is so good for the soul in which you can take time to stop and listen to each other, offering help and support, which in the end, that’s what we should do for one another, right?

Regardless of the fact that Type 1 Diabetes is difficult and has its ups and downs, there is always something to be grateful for. We each may have different views and answers, but whatever pleases you and makes you appreciate the life you live, Diabetic or not, that in itself is something to be thankful for. And the bottom line is that we’re all still alive, isn’t that worth being thankful for?!

So, if you haven’t already, ask yourself: What do you like about Type 1 Diabetes?

Live well,

Dave

Real Talk With Dave: Achieving Your Goals With Diabetes

It has been said over and over again, but you can do what ever you set your mind to! Since the day you were diagnosed, you probably were told by friends, family, and other loved ones that you can still lead a normal life and do what ever you want with Type 1 Diabetes. When I was first diagnosed, I felt like I was at the bottom of a huge boulder that I had to overcome and climb at some point or another just to get to the top. But I was so unsure as to how I could get to the top, all while lugging a heavy weight on my shoulder, my Diabetes. Well, it just so happens that 9 years later (going on 10) I have definitely discovered that it is possible to get to the top and accomplish all the goals I have set for myself. That goes for you as well. Set your goals and dreams, because you are going to achieve them at some point or another, Diabetes or not.

Over the course of my Diabetic journey I have seen so many others who face T1D grow and accomplish so much. Every day there is someone new in the Diabetic community that is going above and beyond in doing what they love, and not slowing down one bit because of their Diabetes. Sure we all get our bad days where Diabetes seems so impossible to beat, but remember, it’s the good days in which we are to make the best out of them and live our purpose. So many people have gone on to do great things- becoming musical artists, doctors, actors, the list goes on- but what makes it so special is that they were able to get to those points in life, all while going through T1D. Was it difficult? Yeah, I’m sure it was. Many non-Diabetics may not realize how difficult it must have been, given their Diabetes, but for those who are aware and know how much Diabetes tends to take out of a person, I’m sure we all applaud them for doing so.

 

The thought of never being able to do many things anymore when first diagnosed is a common thought most people think of while lying in their hospital bed on day 1 of their diagnosis. Little do they know that life is just about to get a whole lot better. More opportunities come from Diabetes. More knowledge, responsibility, and (my favorite) empathy. Knowing the true struggle someone may be facing and being able to relate to the person is one of the coolest things you can have as instantly, you get that person and are able to help each other out. Diabetes also provides friendships, social connections, and a community to be a part of and belong to. Guess you could say we’re some pretty cool people, am I right?!

I do the things that I want to do, because the thought of having to say no to doing an exciting activity because of Diabetes does not sit well with me.

When I want to go out on an adventure, I do stop for a second and think how I will deal with my Diabetes in that event. However, I do the things that I want to do, because the thought of having to say no to doing an exciting activity because of Diabetes does not sit well with me. I don’t ever want Diabetes to determine how much fun I have or what I set out to do in life, socially, academically, etc. All the activities I have done in my Diabetic life, I have done them. Some were more difficult than others, but either way, it was a learning experience in which I was able to gain a whole lot. For me personally, seeing a Diabetic do something so awesome, such as running a marathon, playing a sport for a famous team, or killing the game everyday in a really cool job is so inspiring to see and we all have to keep beating the odds and proving the stereotypes wrong.

So I leave you with this, do what you love and do what you want, because you only get this one life to live, so make the best of it! If you want to be a pro surfer, do it. If you want to be a doctor, do it! If you even want to be the next CEO for one of the biggest companies on earth, DO IT! And show everyone how you did just that at the same time you were managing your Diabetes. Prove those stereotypes wrong and show them who’s boss!

 

Live well,

Dave

Empowerment and T1D

I have always been drawn to empowerment. Growing up, I loved the theatre, I loved the ballet, I loved all forms of performance. I think that the primary reason for this was because of how powerful and confident the performers always seemed.

From a very early age, I knew what my purpose was. I was meant to inspire and empower others in this life…. somehow. To me, that was a fact that was never second guessed. The challenge, as it would prove itself to be going forward, was to find out how exactly I would manifest my purpose.

I was diagnosed with Type 1 diabetes at the age of fourteen. I have lived with the disease for over half of my life now. For a while, my own ability to embrace my inner power felt like it had been robbed from me.

I began to tell stories. It was my way of reaching out, despite my antisocial nature. I told stories through acting in film & television, which eventually escalated into writing fiction, screenplays, and journalism. I told fictional stories as well as the real stories of others – but all the while, my own true story was being written simultaneously.

Organizations such as JDRF and Beyond Type 1 gave me the chance to connect to others who had similar, yet very unique, inner struggles. I became involved in advocacy initiatives that allowed me to engage with these people and to share my own experiences. I began to write for Beyond Type 1, helping others share their own stories with the world. I felt the immense gratification from both sides of the coin, theirs and mine.

This was empowerment, I thought – impacting others with chronic illnesses was, as I realized, what made me feel alive.

The day that KNOW Foods partnered with Beyond Type 1’s Bike Beyond initiative was the day that the puzzle pieces that made up my life would finally and seamlessly come together. I tried this new and interesting healthy food company’s product – low-carb, gluten-free, wheat-free, and non-gmo?! It did not spike my blood sugar and it gave me a truly sustaining energy throughout my days. I knew I had to become a part of this – and so I did.

KNOW Foods’ Founder & CEO, Steve Hanley, recognized my purpose. He recognized how my experiences, leading up to this, would make me the perfect candidate to take on the title of Senior Director of Alliances. I would take the helm would it came to partnerships – with an emphasis on nonprofit organizations that focus on chronic illnesses/disorders such as Beyond Type 1, Beyond Celiac, College Diabetes Network, Autism Hope Alliance, and the list will go on!

I made a vow to myself after being diagnosed with Type 1 diabetes. I vowed to make my #1 priority to live my healthiest life, always and forever, and to help others do the same, even those who were not living with a chronic illness. Everything else would come second.

Today, I can confidently say that I am living out my purpose – it simply took realizing that Type 1 diabetes was the center piece of my puzzle –  the most important piece.

diabetes and empowerment

The Highs and Lows of Diabetes

Diabetes is not easy. This is not news to anyone who suffers from this disease, or is close to someone who has Type-1 Diabetes. This life is full of highs and lows.

After being diagnosed at the age of 4, I knew my life would forever change. I vividly remember shortly after I was diagnosed, my babysitter at the time giving me a shot in my stomach. I remember tears streaming down my face as I crutched onto the sides of the chair experiencing a pain that unfortunately would become my new normal.

As a diabetic, we all have those memories that can’t seem to escape our daily reality, both highs and lows.

The day we were diagnosed, a bad hypo that resulted in using a glucagon, or an extreme high blood sugar that led to DKA. How about the moment when you had to leave a friends house because your pump site failed and you didn’t bring extras, sitting and asking the question, “why me?”

When I had initially started my diabetes Instagram, I was at a low point in my diabetes. I was going through another bout of burnout, and I felt like this disease was taking over my life. I needed to make a change; I needed to get out of this low.

I began documenting my every day with this disease. I’ll be the first to admit that I do not have a spectacular A1c. I fall victim to blood sugars in the 300’s because I forgot to bolus for that cookie I had at lunch. I eat just about everything in my sight when my blood sugar hits 50. I’m not perfect, and neither is this disease. It is important to be transparent and realistic about this disease. We must remember that even though it feels like we experience these highs and lows alone, we are not alone. It is so important to have a good support system to help us through our lows, and cheer us on during our high moments (unless our blood sugar is 300, then please give us some water).

Despite dealing with many lows, I’ve also experienced many highs. My family grew closer and became very involved with my diabetes. I gained many friends both diabetic and non-diabetic. I was able to attend Camp Needlepoint, work with recently diagnosed children and their families, and use my own experiences to advocate and educate. Through diabetes, I’ve become a more compassionate, and empathetic person. My true passion is to help people, and I have diabetes to thank for that. It’s given me the tools to help others; a helping hand, listening ears, open arms for those who feel hopeless or lost. My mission is to continue to help others and also use this disease to inspire change. One of my biggest mottos is “everything happens for a reason.”

Although I’ve had many low moments, diabetes has given me the opportunity to experience many positives.

I’m thankful for those who continue to support me, and for the numerous opportunities that I’m able to take advantage of.

Diabetes is not easy. There are many highs and lows that we face as diabetics. However, even in your lowest lows, know that there are also sweeter moments ahead.

 

The Unmatched Courage That Comes From Chronic Disease

A little over a year ago, after resisting the idea for almost a decade, I finally started working with a type one diabetes (T1D) focused non-profit. T1D was already 100% of my life and I hadn’t wanted it to become even more, but after almost two decades with the disease, I gave into the fact that it was my purpose to make an impact in the lives of other people living with T1D. The first few weeks almost broke me down. Every day, I heard stories of people dying from missed diagnoses, from complications, from lack of access to insulin. I had to learn how to never become numb to it, but forge ahead anyway. The work was too important.

Last summer, after absolutely hating the idea of writing a book about living with chronic illness – I didn’t want to be seen as a sick person – I wrote it (it publishes this September!). I realized that I could use my voice to give hope to others, but I was terrified to never be able to get away from people knowing I had a chronic illness. I put myself out there anyway and ended up writing about the superpowers we gain by living with chronic disease. I became the lucky one here – it has been both rewarding and immensely humbling to be able to connect in such a deep way to people who are managing so much. The chronic illness community is indomitable.

Over the years, as constant debates about healthcare, ever-increasing costs of insulin, and clashes with health insurance have become more and more common, all I’ve wanted to do is turn away and not deal with it, but it’s just not a choice.

I have too much to say, too much knowledge of the industry and the system, and too much ability to affect change to be quiet.

I studied federal healthcare policy at Georgia State University and managed to fundamentally change the structure of the healthcare plan of a Fortune 500 company when I caught that it wasn’t going to work for any of its 15,000 employees who lived with chronic conditions. It has been important to me to get involved with the policy that affects us all, and I have become quite the thorn in my local representatives’ side. We can all affect change with our voices.

Like us all, it was what I have been through that gifted me my passion. My T1D story started on Thanksgiving Day when I was ten years old; I ended up in the intensive care unit of Seattle Children’s Hospital. In the months leading up to the holidays, I had lost nearly thirty pounds on a 5’4” frame that didn’t have the weight to lose; multiple doctors told my mom I was doing it on purpose to somehow better fit in with my peers. I have flashes of memories from that time – trying and failing to eat a single scrambled egg but downing 2-liters of Sprite daily. Barely being able to walk up the hill to my school’s gym. Lots of lying around in bed.

At about four o’clock in the morning on Thanksgiving day, my mom tried, unsuccessfully, to wake me up. My family carried me to our old, boxy Jeep Cherokee and tried to put me in the back seat, but I couldn’t sit up on my own. My entire body hurt. So they put me in the way back, the place I always begged to sit but wasn’t allowed to because of the lack of seatbelts, and we pelted down the highway toward the closest hospital, Overlake Medical Center.

Moments after I was carried into the emergency room, a nurse came over to check on me. She smelled my sweet breath, which should have been a dead giveaway to all the doctors who said these health issues were my own doing. She instantly diagnosed me with T1D.

After being somewhat stabilized in the emergency room, I was put into an ambulance and taken to Seattle Children’s Hospital, where I spent two days in the intensive care unit, then another two as an inpatient, learning what had happened to my body, how to check my blood sugar levels, and how to give myself insulin shots, of which I quickly found out I was absolutely terrified.

I practiced giving shots on an orange first, then on my teddy bear. When my next step was to practice on my mom, to give her a shot of saline, I completely broke down. I could do everything else. I could prick my fingers. I could learn to count carbohydrates. I could skip regular soda. At ten, when everything was an adventure, I could adjust to this new life. But I could not hurt my mom, and I could not hurt myself. The nurses tried to explain that this was the only way to keep myself alive and healthy, but all I saw was my purposely shoving a sharp object under my skin and it broke me.

For the first year after diagnosis, my mom still gave me my shots. Gadgets and technology have since made my life easier, but to this day, if my routine changes, if I have to use a new type of needle, if my insulin pump infusion sets change design, you will find me in a puddle of tears, trying to give myself a pep talk that it’s not going to be so bad. It’s never the pain – the needles don’t hurt that much. But the little bruises and scars they leave are tiny reminders that this is never going away; They are visual cues that at the end of the day, shoving these needles into my stomach, backside, thighs, and arms – it isn’t normal. Needles are and will always be a part of my everyday existence. I remain scared of them. I use them anyway.

It got me thinking – how much in my life has probably been affected by that every day practice of bravery? How many other situations have there been where I was scared of the THING but I did the THING anyway, because that was what I was in the practice of doing? I was a blunt, headstrong little kid, but as I’ve grown up, how much has T1D taught me to barrel ahead even more so than I ever could have done without it?

I can confidently say that I am often terrified.

All the time. I take on projects and jobs and life hurdles that no one in their right mind should take on all at once. But T1D taught me how to be brave, how much I can handle, and beyond that, it taught me how to use my voice to fight for what I believe in. I had to learn how to be an advocate for myself, and I’ve been able to turn that into knowing how to be an advocate for others.

Having a chronic illness is not a great thing. There’s no spin there. But the courage we take from it is unmatched, and for that I feel lucky. This disease has forged me into the person I was meant to become – one who can affect change, use my voice to change other people’s lives, and fight for what I know is right.

Real Talk With Dave: Living With Diabetes, LITERALLY.

Each day, most people wake up to a fresh new start. People living with Type 1 Diabetes, however, tend to be going through something 24/7, to the point where they don’t end one day and start a new day. Diabetes carries throughout the night, waking up the person with low blood sugars, ripped out sites, alert messages from various medical devices, frequent trips to the bathroom, or no insulin going through. Through these experiences, one may feel as though they are not actually living, almost as if they are just doing what they need to in order to cater to the demanding needs of Type 1 Diabetes. That doesn’t have to be the case.

When we think about our lives, we each have different drives, motives, and passions in life that we want to achieve. Having a chronic disease may make it very difficult to find a balance between a normal life and a life where we are actually healthy and doing everything in our power to stay in control. It’s all in the mind, though.

If we tell ourselves how we truly want to live our lives to the fullest, we will get there.

Nobody wants to sit at home and worry about their Diabetes, having to constantly do what it tells us to do. We are the ones who are in control.

The day to day experiences we go through with our Diabetes can be very draining and overwhelming to cope with, so we need to find a balance where we can still maintain our life outside of the Diabetes world. Living your very own purpose can and should be done. If Diabetes seems to get in the way, it’s really not. It’s just adding more experiences to go through and to have knowledge on for the future or to help others. Don’t get me wrong though, we still have those very dark days where we can’t seem to find peace with our numbers and overall wellbeing, but it is the good days in which we can be a light for others and show them that despite what we go through every moment of our lives, we can still be kind to one another and live, actually live.

I personally have had my own personal battle with Diabetes and though I still fight the fight like no other each and every day, I live the life I choose to live. I want to be helpful to others. I want to share, create, and learn. I want to go out and explore the world, and you know what, that is exactly what I do. I don’t let Diabetes determine what type of life, let alone what type of day I am going to live. We all go through Diabetes a little differently and it takes time for one to truly own this disease and not let it be in control, but trust me, it can and will happen to you, and when it does, you will feel like you have just crossed the finish line to the race of life!

Dave

“Good Morning Carolina, Did You Know You Were a Diabetic?”

“Good morning Carolina. I need you to come back for a shot of insulin and IV fluids immediately. Did you know you were diabetic?”

That was the unwanted wake-up call I received the morning of Friday, February 26, 2016. I had been feeling terrible for weeks and just spent the night drinking water and using the bathroom almost every hour. I was confused, nauseous and beyond exhausted. Little did I know I had been experiencing all of the horrible symptoms that could lead to diabetic ketoacidosis (DKA). I lost about 25lbs, my eyes were sunken, I refused to eat, was extremely irritable and I was fighting a horrible infection from an unhealed wound. Napping a few times a day had become my new normal.  The only knowledge I had about diabetes, however, was what I learned about ten years ago in my 8th grade biology class.

Insulin, blood sugar, syringes, etc. were all foreign terms that were about to become a part of me.

“How could this be happening to me?” I thought. Just two months ago I was in the best physical shape I had ever been. I was a CrossFitter 5-6 times a week and I generally ate very healthy –even counted calories and sometimes carbs (ironic, I know). I was also an MBA student, a graduate assistant, a babysitter, and a CPA candidate. Stress had become a part of everyday life, and although I refused to let it take control over me, that wasn’t my choice to make and my body wasn’t taking it anymore. It was slowly but surely flipping a switch on me.

On February 27, 2016 I was admitted into the ER with a blood sugar of 373 mg/dL, shortness of breath, and the chills—I was FREEZING. Within the first few hours of my first hospital stay, I had X-rays taken of both my chest and my shin, IV lines placed in both arms, a bacterial culture was taken of the unhealed wound on my shin, and best of all I was told I was going into DKA –a brand new term which I refused to learn more about at the moment because I didn’t want to freak out and make the situation worse.

I heard the doctors and nurses throwing around terms I had never even heard of and it felt like I was on an episode of Grey’s Anatomy, except I felt like total crap and I wasn’t getting paid to act.  

After spending about 36 hours as an ICU patient and three days in a regular hospital room I was finally released into the real world where I now had control my own blood sugar by giving myself shots of insulin. In the beginning I was in shock. I couldn’t believe that after 22 glorious “normal” years, my life now depended on tiny amounts of this weird smelling clear liquid, which I had to inject with a needle.

The first few weeks I refused to research the topic because I was scared that WebMD would tell me I was dying, and to add to that I had a visiting nurse who further instilled fear by telling me I should no longer get my nails done at the nail salon or that I could no longer wear my favorite pair of heals anymore because I had to take care of my feet. I was emotionally drained and just wanted to go back and live at the hospital so my diabetes could be taken care of for me.

Thankfully those days didn’t last too long. As I began to get the hang of having to give insulin to control my blood sugars, I began to research the topic more and follow other diabetics on social media. I was able to get on an insulin pump and continuous glucose monitor after only a month and lowered my A1C to a healthy level a few months later. Diabetes was extremely scary and discouraging in the beginning but over the past year this full time job has taught me a lifetime of knowledge.

I’ve learned that my perfectionist ways of the past won’t work with diabetes.

It’s a disease that is affected by so many factors which makes it nearly impossible to manage perfectly. You kind of just have to go with the flow, roll with the punches, and keep living as if it hasn’t made a dent in your life.

I was lucky to have found the JDRF Young Leadership Committee, a group of diabetics that are in my age group in New York City. Some of these people have become my “diabesties” and have truly helped me feel like I’m not in this alone. I’ve also started my own Instagram page with the hopes of inspiring and supporting others in the t1d community. In addition, I recently rejoined CrossFit with the goal of becoming even stronger than I was before I was diabetic.

Having diabetes has become my new normal and although I wish I didn’t have it, it’s taught me to take each day as it comes and to look for the silver lining in absolutely everything. I only got one life to live and I will NEVER let diabetes bring me down.  


Follow Carolina on Instagram: @beatinbetes

With Diabetes, You Can Do Anything!

Diabetes has been a part of my life for 22 years. On February 9th, I celebrated my Diaversary. I always knew diabetes wasn’t my purpose, my purpose is to live my life the fullest and that’s what I communicate to all people with diabetes –

“you’re the purpose, not diabetes, so do everything you can to not let diabetes stand in the way of your dreams”.

I have had type one diabetes since the age of 4 (1995). Many people think that I’m used to it because I was diagnosed as I child and I don’t remember life as a healthy person. But as every person with a chronic disease, I dream of a life without it. Unfortunately, I remember some images from the hospital and feelings of pain, fear, and sadness. Till this day I’m afraid of taking venous blood samples for tests in clinics, because of how traumatic it was to me when I was diagnosed.

In the begging I was treated with insulin injections, then I was on insulin pens and in 2003 I got my first insulin pump. Since that time I became a “full-time pumper” with no breaks. For most of the time, diabetes was just a normal part of my everyday life, nothing special. I only experienced some teasing and discrimination in elementary school, but time heals wounds, especially when you meet some nice people after a tough time in your life.

Now I am a Diabetes Youth Advocate, a Diabetes Educator, and a Diabetes Blogger. Raising diabetes awareness is an important issue to me…but how did it happen?

weronika-kowalska-coming-out

It all started with my diabetes burnout in 2013 – when my disease “turned 18.” I felt kind of depressed that it’s “an adult” now, and so many years have already passed. I was exhausted and unhappy at that time. One day I thought that maybe I could overcome it with running a blog. I was writing a lot of poems, stories, and songs, so that’s why this idea came to me in a natural way. With the support of my family and boyfriend, the blog was finally created.

I’ve decided that the symbol of my blog will be a blue sugar cube because I think sugar cubes are so cute and of course blue is our color. 🙂 At first, it was only my personal thing, but to my surprise, people started to read my posts! It turned out that I’m not only helping myself but also other people with diabetes, and parents of children with diabetes.

Then many things in my life changed for the better! I received both Bachelors Degree and Masters Degree with honors (in Exhibition Design Study) and my Masters’ diploma was presented on Coming OuT Best Diplomas of Academy of Fine Arts 2014. I also managed to finish my second field of study on the Academy – Pedagogical Study, which allowed me to gain experience in teaching arts and crafts to children, adults, and people with disabilities.

I wanted to use my artistic skills to change diabetes somehow. That’s why in 2014 I have created two adorable monsters – Hypo (blue) and Hyper (red), which represent hypoglycemia and hyperglycemia. I wanted to encourage people with diabetes to talk about symptoms and emotions related to those states and to explain to healthy people how it works. Hypo and Hyper were heroes of the calendar which were designed for diabetes clinics in Poland in 2014.

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I’ve started to be involved in many different social campaigns and actions (Menu for diabetic, How to Live with Diabetes, Human Library and more), write articles and feuilletons for diabetes magazines or portals and even lead free lectures and educational meetings for people with different types of diabetes in Polish Diabetes Association. I became certificated Diabetes Educator by participating in course organized by one of the polish diabetes foundations. Recently I founded the diabetes group Blue Sugar Cubes on Facebook to give people with diabetes and their families more support.

Last year was truly a turning point in my life. I was a participant in International Diabetes Federation Europe Youth Leadership Camp 2016 and now I act as IDFE Diabetes Youth Advocate. For World Diabetes Day 2016, together with two friends from camp, we led our first diabetes campaign eUrMOVE in collaboration with IDFE. I designed logo and graphics with Hypo and Hyper. The campaign was a huge success and we look forward to doing more for diabetes cause this year.

Now I only hope that my fiance’s patience will stay on its’ high level forever, because I’m one crazy diabetic girl 😉 With diabetes you can do anything!

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Becoming a Chronic Patient

26 June, 2009

I had woken up with Michael Jacksons’ “Ben” streaming out the radio. The news of his death had reached South Africa. I wrote my last mid-year examination of Grade 10 and celebrated by watching the newly released “The Hangover”. While we discussed the obsceneness of the film, I received a not-so-average phone call from my mom who had taken my little brother to see a doctor.

“Tracy, your brother has been diagnosed with type one diabetes”

Sure, my brother David had looked exceptionally unwell, stick thin and couch ridden, a far cry from his athletic build and energetic character. But what on earth is type one diabetes (T1D)?

“So what does that mean? Does he need antibiotics?” I replied.

Little did I know the whirlwind that was about to hit my brother and my family. We all grappled with the concept of T1D. What do you feed a type one? Is sugar bad? Insulin injections? What is insulin? Daily monitoring of blood sugars? We were a family unit exceptionally confused and desperate to help David through this diagnosis, but not fully understanding how.

David had gone from carefree 14-year-old to being his own doctor and primary caregiver- administering his medication every day.  He singularly experienced crippling low blood sugars when injecting excess insulin and the exhaustion of high sugars when he did not take enough. He was alone with these feelings as we could only try to understand and help where we could.

The integration of diabetes into an individual’s life and further more into a family’s life is challenging with mental, emotional and physical hurdles. Education regarding T1D came through websites, the endocrinologist, courses, and books, but more potently- through the experience living with a T1. We learned together through trial and error. We now knew and understood the symptoms, lifestyle of consequences of this chronic illness. (That most definitely does not require antibiotics, thank you Tracy of ‘09.)

At least, we all thought we had the subject waxed.

20 October, 2013

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I stared at my skeletal body in the mirror, my 20-year-old, incapable and broken body. My body and mind were permanently exhausted and constantly failing me. My bloodshot eyes searched and traced my bones. My head was surging and nausea scratched at my dry throat. Surely not, I thought.

With a knotted stomach and shattered threshold, I asked David to test my blood sugar. The countdown of the tester was excruciating, how could 8 seconds feel like an eternity? The monitor greeted me with a beep and a cheeky “HI”. Simple as that, I was diagnosed with type one diabetes. The tears flooded my eyes and streamed across my face.

My heart felt an incredible amount all at once.

It broke and ached.

It felt immense relief finally knowing why I was sick.

It broke again, for now I needed to break my parents’ hearts.

It sang that my brother and I were now a team.

I went from standing on the outside of T1D, curiously and helplessly peering in at my brother, to stepping in, right by his side with my own T1D diagnosis. I watched David tackle it for four years, expressing my sympathy and support. Now I was fully thrust into a position of empathy – I now knew what he felt.

With 10 years of exposure to T1D from David’s diagnosis to my own, I have felt the obvious lack of knowledge surrounding T1D in society. We don’t know the symptoms and we cannot seem to recognize the lethal combination of exhaustion, excessive thirst and bathroom breaks, unintended weight loss, blurry vision, irritability, and nausea. I was a second-year medical student, with a T1D brother yet it still took me months, to acknowledge my symptoms, to recognize my disease and act accordingly.

The thought that I possibly had T1D did flash across my mind in my last weeks leading up to my diagnosis but I kept dismissing my symptoms:

I am exhausted from being so busy.

I am thirsty and losing weight because I am doing Bikram Yoga.

I am crying, angry and frustrated each day because it has been a tough year.

I am simply burnt out.

The symptoms are problematic as they can be explained by most stressors in modern daily activities, which effectively delay an important diagnosis. Further impairing prompt and vital healthcare falls upon the shoulders of health-care professionals. The T1D diagnosis is often missed. It is a tragic oversight as it can be suspected by simply taking a patient’s history and performing affordable bedside tests. A urine dipstick or a finger prick glucose test can often scream T1D. The delay and failure of diagnosing T1D carries a heavy price, such as the heart-breaking stories of little Kycie Jai Terry (5), Claire Taylor (17) and Nicola Rigby (26), all losing their lives to undiagnosed T1D.

Living with this chronic illness has made me acutely aware of spreading my knowledge and insight into T1D. This inspired me to start my own Instagram account, type1tracy. Diabetes has enriched my approach in my medical studies, as I have become the chronic patient. It has made me mindful, grateful and present. Accepting my diagnosis, I have achieved more than imaginable and am blessed with appropriate medical health care. It has made me strive to be the best doctor I can be.

If you have T1D, you are empowered with knowledge. You never know whose life you may change by injecting your insulin in public, sharing your diagnosis, your symptoms, and your experiences. Above all, you can change lives and your own, by fully embracing type one diabetes – all while being unapologetically you.

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