Exclusive interview with Swedish physician Karin M. Hehenberger
10 March, 2020
Exclusive interview with Swedish physician Karin M. Hehenberger
Karin M. Hehenberger, M.D., Ph.D. is a Swedish physician, investor, business executive, and diabetes expert, known for her work in the field of biotechnology. She has written numerous articles on biotechnology that have been published in peer review journals and worked as an executive for different biotechnology companies and investment firms. She has been fighting against Type 1 diabetes for 30 years now. How does she live and how does she help her patients? Karin M. Hehenberger speaks with Georgian Journal

I would like to start our interview with the backstory leading to your success. What is your story, including how, when and why did you decide to become a doctor?

I was diagnosed with Type 1 Diabetes in July of 1989, and the disease had never fully become a part of me. At the time I was a healthy young athlete, playing tennis on the Swedish National team, and an excellent student. Nothing I had experienced in my life could have prepared me for this moment. I was shocked and devastated, but receiving this diagnosis motivated me to work harder, with even more determination, and helped to carve out my life’s path. I hated it from the beginning, and never worked to embrace it. However, I did work hard to study the disease, both as a student of medicine and science as well as a businesswoman later on in my career. I wanted so desperately to get rid of it and I also refused to let it limit me. But it did. I realized how much I was truly burdened by this chronic disease once I was free from having to constantly think about my blood sugar and insulin dosing.

My family and I did not know much about T1D, but upon my diagnosis, we dug deep and subsequently changed our ways to accommodate my condition. My mother, who is an amazing cook, prepared healthy meals for all of us. My father, a scientist, read a lot about the etiology and prognosis for diabetes. As a family, we decided not to tell anyone about my diagnosis because I did not want to be treated differently. Additionally, at that time, I did not see a benefit in sharing or learning from other patients. Rather, it scared me to see people with complications or to learn about others who had to make significant lifestyle changes due to their diabetes. I did not want to identify as “a patient” or “diabetic”. I wanted my freedom back and I never wanted to depend on anyone or anything!
Karin M. Hehenberger with her child

There is one moment during the first day in the hospital (I was in DKA when diagnosed so I had to be hospitalized for a few days) that still haunts me. A nurse said, “You are lucky to be diagnosed now, in 1989. If it had been a hundred years ago, you would have been dead since insulin did not exist as a viable treatment for patients until after 1921.” I passed out and never fully recovered – I was now a slave to a drug, and I was only 16.

To this day, I still consider the day I received my diagnosis as the worst day of my life. There is nothing about diabetes, itself, that I am grateful for and I would never wish this situation on anyone else. However, my journey with the disease, namely the complications and recoveries, have made me a stronger and more compassionate person. That being said, I do think it stole a part of me that continues to affect my life even as I move further away from my initial diagnosis. I was a confident and very happy young child, and although I have remained a fighter and an optimistic person, my experiences with T1D have enabled increased self-doubt and insecurity concerning my body’s capabilities. Since I felt I was in a race to do as much as I could before it was too late, my diagnosis drove me to pursue science and medicine with a vengeance, completing my MD and PhD degrees in record time. I also set out to prove to the world that diabetes did not affect me, or rather that I did not HAVE diabetes.

After about 20 years living with the disease and a very competitive career in healthcare, my ability to mask my illness changed when I started developing complications from diabetes. I realized that people now would know I not only had diabetes, but also faced some of the serious late-stage complications affecting my kidneys, eyes and my autonomic nervous system that took a huge toll on me. As a result, I spent years undergoing both kidney and pancreas transplantations, multiple laser treatments on my retinas to save my vision, and receiving a pacemaker to prevent fainting.

Upon recovery, I felt great! Now was the time to really make an impact and to use my mistakes to help others. I co-founded Lyfebulb in 2014, with the mission of improving the lives of those living with chronic disease through the power of the patient. Lyfebulb was built upon two foundational concepts that are still key: patients need patients and patients can be innovators. Today, five years later, we have built targeted communities in six different therapeutic areas, organized eight innovation challenges across five different disease areas and have grown our total following. We believe that there are parallels in learnings between chronic disease states, and patients can feel empowered by sharing their insights and solutions to daily problems associated with their disease. We coined the term “patient entrepreneur” and have grown our group of incredible individuals to well over 100. While we source ideas and inspiration through patient entrepreneur innovation, our 60+ patient ambassadors across the world share their stories and participate in events emphasizing the educational power of shared, lived experiences. Very shortly, we plan to bring them all together digitally to share experiences and synergies.

My life looks very different now than what I may have expected before my diagnosis in 1989. I never became a big tennis star or had a traditional career as a medical doctor or even as a business executive. However, I could not be happier. Against all odds, I was able to have my own baby 21 months ago, finally got married 2 and a half years ago, and my first child, Lyfebulb, is thriving with a great team and even greater impact. All of this has required lots of fighting and lots of pain. Although the fight is not over yet, I know that I now have people who depend on me, and this fact makes all the difference in my approach to managing my health. I still try to maximize every working moment because old habits don’t die easily, but I have learned to think more long term and to try to be a little less hard on myself.

In Georgia, Diabetes is especially prevalent in children. How can parents prevent diabetes in children? What advice or recommendations could you offer them?

There is no established or approved therapy to prevent Type 1 diabetes. In contrast to Type 2 diabetes, T1D is autoimmune and not related to weight or diet. The best advice I can give parents is to be vigilant for symptoms in order to make sure their child, if diagnosed, gets treatment as soon as possible. Some early signs of T1D are increased urination, thirst, weight loss and fatigue. In the future, we hope to be able to identify high-risk children from birth and treat them preventively to preserve their pancreatic function and beta cell mass.

Since pancreas transplants are relatively new and foreign to us in Georgia, can you tell me a little about your experience?

Pancreas transplants are rare, but have been performed over the past 50 years. In fact, my surgeon, Dr. David Sutherland did his first one in 1973. He is one of the pioneers in the field. I received my pancreas transplant on Jan 2, 2010. This means I have been insulin independent again for 10 years since my T1D diagnosis at age 16.

No words can fully describe how this gift changed my life for the better and how much the experience taught me about the reality of living with T1D. In fact, much of the foundation of Lyfebulb came from these insights: patients need patients and patients can be innovators. Two very important concepts that I only understood after my pancreas transplant.

Diabetes took something from me that I never got back, even after regaining insulin independence through transplantation, which was my innocence and belief in happy endings. However, it taught me that fighting would forever be an essential part of my new reality and that being different was always my destiny.

Ten years ago on that morning in January, when I was on the table waiting to be put under and cut open, I had no memory of what life looked like without T1D. Almost 12 hours later, I woke up in great pain but, for the first time in quite a while, was already producing my own insulin that started to heal my failing body.

When I was discharged from the hospital, thus began my road to recovery. I had already been through one transplant nine months prior (a kidney from my father), so I was put on the same drugs, and was in better shape than I was before my first transplant. Only 10 days before my pancreas transplant, I had passed out and hit my forehead on the dishwasher corner, which led to a broken nose, cracked open forehead, and the loss of a couple of teeth. This accident was due to my T1D, so the transplant was extremely urgent. Although my face was still bruised from the accident, I was ready to fight for my new life during this period of recovery and each day I got a little bit better.

The first few days after the surgery, I was weak. However, I made a point out of walking a little each day and making careful food choices to gain strength. I had learned from my kidney transplant that there were certain foods that were better with the immune suppressants. These particular foods helped my stomach to handle the heavy drugs so I had a lot of toast, bananas and soup. I needed gentle and mild sustenance so I avoided spice and anything raw or fibrous. Interestingly, my diet has not changed much since my time with T1D. I still cannot eat foods like pizza, pancakes, pasta or rice. Although I’ve slowly added sweet potatoes and some bread to my diet, the psychology of living a low-carb life does not pass easily!

After a week, I could leave the hospital and after two weeks, I was cleared to fly back home to New York from Minnesota where I had my surgery. I remember it being such a happy trip back, with a newly felt freedom where I had no need for insulin or glucose testing. I felt like my life was starting again!

Only one week later back in New York, I started to feel tired and very weak. Something was clearly not right, and I went to the hospital late at night after speaking to my physician. Sadly, I had an infection and was readmitted to the hospital. I was now at Columbia Presbyterian, since that is where my local transplant care is based. It took another week before they isolated the cause of my infection. It was an abscess close to the pancreas, which needed to be drained and cleaned. To do so, I had a tube inserted into my abdomen and a bag hanging from it, which collected the nasty bacterial fluid 24/7. This went on for an entire month and it came with a period of intense pain. Every time I spoke, moved or coughed, it hurt. Laughing was impossible! After the tube was removed, marking the end to this difficult time, I was on the mend and my journey toward health was back on track.

Today, 10 years after that incredible day, I think back to the family whose young daughter died and the decision they made to donate her organs, which changed my life (and most likely many others’). I cannot imagine how they must have felt that day, but since I now have a little daughter of my own, I understand the emotions of seeing your child in pain. To this family: I thank you from the bottom of my heart. I promise you to take very good care of your daughter’s pancreas, to do as much GOOD with my life as possible and to never, ever take anything for granted. I learned too early that life is a constant fight, and I know too intimately the fear that comes when you are close to losing it. If the kidney transplant saved my life, the pancreas from your daughter made it worth living again.

What is the most important thing to pay attention to when first diagnosed with T1D? How can family members and a support system best help out?

I believe there are several aspects to be covered upon diagnosis. First, of course, it is crucial to receive a diagnosis early enough to avoid ketoacidosis, which can kill you! Establishing routines and getting educated about the disease and its consequences if not treated properly are also critical for both the patient and the family. Understanding what to do if the blood sugar is very low is life-saving information, and should be taught to not only the family members, but also friends, colleagues, school personnel etc. I also believe the emotional aspects of having a chronic disease, which will affect every part of your life going forward, need to be handled. Personally, I did very little here, and I regret that. Connecting with others who have been through what you are about to experience is helpful. At Lyfebulb, we are building a digital product that will do this at scale.

Can you tell us about the newest treatment methods for Diabetes?

There is no new therapy for T1D other than insulin, while people with T2D have access to a number of new drugs such as GLP1, DPP4 inhibitors, SGLT2 inhibitors, and fixed dose mixtures of the above. Inhaled insulin has been approved for both kinds of diabetes, and although there is a practical advantage in avoiding injections, and it does have a speedier onset of action, it is not a fundamentally new drug. For people with T1D, most innovation has happened in the device space, with continuous glucose management, and smaller, more consumer friendly insulin pumps. In the future, we hope to see better drugs for people with T1D as well, including some of the T2D drugs that are now being used off-label. Optimally, we would love to see cell therapy without immune suppression to cure T1D, and several companies are approaching the clinic. On the prevention side, companies are working on immune modulatory compounds that would stop the autoimmune attack of the beta-cells that produce insulin. If that would work, no one would need to ever develop T1D! Consumer devices such as behavior-modifying apps and diet regimens are also novelties in the market, helping people with diabetes to live healthier.

Is there a cure for diabetes?

No – there is no current cure for either T1D or T2D, but one can reverse T2D if caught early enough. Since people with T2D are able to secrete insulin early on in their disease and their main issue is resistance to insulin. This is why weight loss and behavior modification can truly help and even reverse the disease in Type 2. I have a special passion to improve the outcomes for people with Type 1 diabetes and successfully eliminate this terrible disease. Getting a pancreas transplant is only a bridge to a cure. It is not a real cure. Together we must identify solutions to provide everyone with a defective pancreas the insulin-producing cells that can be implanted without a need for toxic immunosuppressive drugs. This will not happen overnight, and it will not happen without team work across borders and disciplines. When the United States decided to get to the moon, they worked on a plan until they solved the problem. When they decided to create the first nuclear bomb, they reached an answer. We need to address curing diabetes in a similar fashion. There are no alternatives to success. No pride, no territorial behavior, but relentless focus and clear leadership is required to win this battle.

A lot of people will read this interview, taking interest in this important topic and your personal connection to it. How would you reply to these individuals?

Thank you for your interest in diabetes – the disease affects a tremendous number of people worldwide and causes much damage and suffering. The economic impact of the disease is also vast, so we have to work together as a society to combat this disease and its complications. I have lived with T1D for more than 30 years as well as dedicated my life to solving the problems associated with the disease. At Lyfebulb, we believe that the insights and ideas from patients and care partners will help drive better solutions in the marketplace and thus allow patients to heal themselves and take control of their lives!

Is there anything else you would like to add that we didn’t get the chance to talk about?

Lyfebulb has recently entered into the transplant space. We are already in six other disease areas; Diabetes, Cancer, MS, IBD, Mental Health and Migraine. We will be building a community online and in-person for people living with transplants and their care partners. We will be searching for the best new, innovative solutions to improve quality of life by listening to people who have been through the process of a transplant. I am proud to make this announcement since it is a population that, so far, has not had a real home and where innovation is far from fully exhausted.

Nino Tsipuria

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