An interview with Karin Hehenberger, M.D., Ph.D., founder and CEO of Lyfebulb, about her experience with type 1 diabetes

September 13, 2019
Diasome.comDiasome BlogAn interview with Karin Hehenberger, M.D., Ph.D., founder and CEO of Lyfebulb, about her experience with type 1 diabetes
Karin Hehenberger, M.D., Ph.D
Dr. Karin Hehenberger is an experienced life sciences executive, who has dedicated her career to applying medical science to impacting people living with chronic disease. Dr. Hehenberger founded and launched Lyfebulb in January of 2014, after close to 20 years of experience in the healthcare industry, which she entered after obtaining M.D. and Ph.D. degrees from the Karolinska Institute in Stockholm, Sweden and conducting her post-doctoral work as a JDRF fellow at the Joslin Diabetes Center at Harvard Medical School. Lyfebulb is a chronic disease-focused, patient empowerment platform that connects patients and industry to support user-driven innovation. Lyfebulb promotes a healthy, take-charge lifestyle for those affected by chronic disease. Grounded with its strong foundation in diabetes, the company has expanded disease states covered into cancer, inflammatory bowel disease, multiple sclerosis, depression/anxiety and migraine. Dr. Hehenberger has held leadership positions in the biopharmaceutical industry including at Johnson & Johnson, Eyetech pharmaceuticals and Coronado biosciences, as well as on the investment side of healthcare at both private and public multi-billion-dollar funds. Dr. Hehenberger is considered an expert in the field of Metabolic disease and is an invited speaker at numerous conferences and at corporate strategy sessions on this topic, as well as the subject of patient impact, innovation and alternative financing methods for early stage research. She recently gave a TEDX talk in Lugano, Switzerland on the importance of patient involvement in reversing the global diabetes pandemic. She is a Senior Advisor, Biotechnology and Medical Innovation for the Department of Endocrinology and Surgery at the Karolinska Institute, the Scientific Advisor to the CEO of Helsinn, member of the Advisory board for the Helsinn Investment Fund (HIF) and a Board member of Amal therapeutics. She is also a board member of the Rolf Luft Diabetes Research Foundation, the Alliance for Regenerative Medicine Foundation (ARMF), and was previously a board member of the Lighthouse Guild foundation. Dr. Hehenberger has published a book called “The Everything you need to know about diabetes cookbook”. She is a Swedish citizen but is based in New York City.
Get their bookView their FacebookView their InstagramView their LinkedInView their Twitter

Diasome: After a successful pancreas transplant and no resurgence of symptoms related to diabetes, can you give any background information about why successful pancreas transplants are so uncommon? Is it attributed to the difficulty finding a match or the immune response typically invoked by the transplanted organ?

Karin Hehenberger (KH): It is a declining practice that had little prevalence to begin with for several reasons. It is an invasive, long and high-risk surgery. When you have a pancreas transplant, as with any organ transplant surgery, you need to be on immunosuppressants for the remainder of your life which increases your risk of infection and cancer. Typically, only those with diabetes who need a kidney transplant are even considered for a replacement pancreas because you are obligated to be on the immunosuppressants anyway. If successful, pancreas transplants have numerous benefits including preservation of kidney and eye function. Remarkably for recipients, quality of life is restored as they become insulin-independent.

Diasome: Have you had any serious complications post-surgery? What has your immunosuppressant regimen consisted of?

KH: My kidney transplant saved my life but my pancreas transplant made it worth living again - I am in much better shape now than I ever was before the transplant and after my diagnosis. Being insulin independent has truly transformed my life and made me realize how much more we need than merely insulin as people living with T1D.

After each transplant, I was receiving chemotherapy which made me weak and nauseous and it caused weight loss. In the short term, the immediate recovery from each surgery was difficult. In the long term, due to the immunosuppressants, I have had 4 infections requiring hospitalization with one instance being a serious case of salmonella sepsis. The immunosuppressants affect the adaptive immune system so it would be difficult for me to travel somewhere with new diseases. But being in New York, an office area or airport, I am not particularly vulnerable. Since my surgery, I also experience daily gastrointestinal side effects. I had an iron stomach before; now I must be very careful. I also have had basal cell carcinoma, a form of skin cancer. I am too young to get that type of cancer, so that risk was most likely exacerbated by the immunosuppressants.

Diasome: Could you explain how being an M.D. and Ph.D. has changed your experience as a diabetes patient and post-transplant patient?

KH: I have always addressed my issues theoretically and practically. I usually try to find a solution to bad news by digging deep and learning about the problem versus reacting emotionally. I think as a researcher and investigator, I have been able to find solutions better than the average patient. I have been able to use my own journey to benefit others with Lyfebulb. The goal of Lyfebulb is to bring some of my mistakes, as a patient, to the attention of others. That way we all can learn and create better ways for patients to handle problems on their own. Being so scientific in my thinking hurt me dramatically as a young person with diabetes, and I never handled the situation on an emotional level. Surprisingly today, we have so many young ambassadors fully addressing their diseases. They would be interested in the work Diasome is doing.

Diasome: I did want to ask a little bit more about Lyfebulb. Since its foundation, how do you feel about what you have accomplished? What does the future look like?

KH: Absolutely. We are in the middle of a significant growth period. We have partnered in six different disease areas. Lyfebulb started out as a project for me and we were working only with diabetes. Our goal was always to connect people with one another so that they can learn. I believe you can learn more from a patient in certain cases than you would from a doctor. That person has gone down a path you are about to experience. That was one of the foundational concepts: patients need patients. I’ve discovered that patients can be innovators as well. Lyfebulb has brought together more than 150 of these patient entrepreneurs who are living with a disease, can identify issues, and go for it! Now we are working in diabetes, cancer, inflammatory bowel diseases, multiple sclerosis, depression, anxiety and, as of today, migraine. In each of these diseases, we have created a targeted community. We frequently host innovation challenges where patient entrepreneurs can compete worldwide for monetary prizes while gaining exposure and having the opportunity to network. It is so important that we can serve as the bridge between the patient community and industry. Our goal is to help bring products to market. I think the industry desperately needs more patient insights. I would like to see more patients invited to sit at the table. What really makes a difference in a patient’s life is not a regulatory endpoint and often not what the doctor thinks is important. Next for Lyfebulb is the creation of digital products, for example, a connectivity app where one person can connect with another instead of diving into an entire community. I see Lyfebulb, in the future, also providing support for the caregiver role because the parents, siblings and spouses are facing their own challenges. When you are diagnosed with a chronic disease, it takes over your life. You then become the center of attention for your family. Sometimes it is hard to know how to treat someone with a chronic disease. You do not want to patronize them, but at the same time, you do want to miss attending to them as needed.

Diasome: Would that app be more of a social platform or more of a mentor-mentee system?

KH: It is difficult to say exactly how it will unfold. The mentor-mentee system will be the initial set-up, but those roles can change over time. When I was diagnosed at 16, if I had had a mentor to connect with maybe I would not have felt so alone and so different. The best way of learning is often to teach, so I think the roles are going to be constantly changing in that system. I would have later become a mentor to someone newly diagnosed with type 1.

Diasome: When you were diagnosed you were playing for the Swedish national tennis team at the time. Can you tell me more about how your diagnosis affected your athletics?

KH: I played the European championships and the world championships for teams. I was very active between 12 and 16 years old. It was difficult when my disease affected my athleticism and it has taken me a long time to recover. Now I feel better and I am getting back to the confidence that I once had. The idea that my pancreas wasn’t working was something I took harshly. I felt like a failure and I was ashamed. I thought people would judge me.

Diasome: Do you play tennis at all now that you have been post-transplant for some time?

KH: I started playing again this year. For many years I did not play because of my health. This is the first time in so many years that I’m back at it and I am enjoying myself. And I think it has to do with my young daughter.  My goal is for her to play tennis and I need to be ready to teach her when she is old enough. I want to be a strong mother for her. I am now living for someone else. Having a baby has helped take my mind off my own problems. On top of a pacemaker, I have two organs that could fail at any moment. I can’t constantly worry about the consequences if one of those were to fail.

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

KH: I think that as a type 1 diabetes community, we need to start being real about our disease. It’s not easy to live with this disease and I think some people are afraid to write about or even acknowledge the raw problems of the illness because it scares newly diagnosed individuals and their parents. On the other hand, if we never identify those problems, we are never going to get more money or accelerated regulatory pathways into the space. Ultimately, we need more products in the marketplace for people with T1D in addition to insulin.

Share your story with us.

Diasome seeks to serve people with diabetes by developing cutting-edge therapies and by serving as a forum for our community to educate and inform others about the challenges and successes in living with diabetes. We actively seek perspectives from the rich and diverse world of clinicians, scientists, thought leaders and people with diabetes. To share your unique perspective with us, email Diasome at info@diasome.com

Stay up-to-date with Diasome.

Enter your email address
Oops! Something went wrong while submitting the form.
10000 Cedar Avenue
Suite 6
Cleveland, OH 44106
+1.216.444.7110
info@diasome.com

Media Relations

Cherilyn Cecchini, M.D.
LifeSci Public Relations
+1.646.876.7110
ccecchini@lifescipublicrelations.com