My Story & The Beginnings Of Lyfebulb
It was July of 1989. 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 the moment I was diagnosed with Type 1 Diabetes. I was shocked and devastated. I hated it. I refused to truly embrace this disease. But receiving this diagnosis motivated me to work harder, with even more determination, and helped to carve out my life’s path.
I worked hard to study the disease, both as a student of medicine and science as well as a businesswoman later on in my career. Despite my learned knowledge, the complications from my disease led to kidney and pancreas transplants, as well as pacemaker surgery. It was a long road to recovery from these surgeries, but eventually, I felt great, or as great as one can feel taking the various medications to keep the transplants healthy. Now, I felt empowered (and frankly responsible) to really make an impact and to use my mistakes and new chance in life 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 I formulated during my first 20 years as a patient and a businesswoman: “patients need patients” and “patients can be innovators”. Today, six years later, we have built targeted communities in nine different therapeutic areas, organized eight innovation challenges around the world, and have expanded our suite of services to encompass several patient-empowering activities. 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 through interviews, workshops and panel discussions, and those insights are also valuable for companies when they consider new products or the positioning of existing ones. We coined the term “patient entrepreneur” to highlight the personal connection between identifying an unmet need through a lived experience and creating a solution. We source ideas and inspiration through our 100+ patient entrepreneurs. Our 75+ 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 on a Lyfebulb platform, ask questions of each other and connect 1:1. Our first disease area is going to be transplant patients and their care partners.
Lyfebulb encourages patients to measure their accomplishments by what their abilities are, take small steps, and then reward themselves for those small steps and achievements. We inspire through hope, we inspire through innovation. We want to bring health care to self-care, so that people can start taking care and taking charge of their lives. That, to me, is the best impact that Lyfebulb can have. Lyfebulb’s long-term vision has always been that we want to be the place where patients can connect with one another in a safe way and across different disease categories. So I wanted to create a platform to provide an environment for positive, constructive discussion where people would feel safe, and I think transplant is a great way to start because the transplant community is lacking a digital platform and even a strong community.
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 girl almost 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.
I’m still living with the byproducts of Type 1 diabetes, and I have a kidney transplant, a pancreas transplant, and a pacemaker. I need to constantly be aware that things could go wrong. But it doesn’t make me sad. It doesn’t make me stop. And I want to enable other people to live the best lives they can.
