At the age of 16, I was diagnosed with type 1 diabetes. It was the worst day of my life.
I was devastated. At the time I was a competitive tennis player in Sweden and had represented my country on several occasions in the European and World championships. I was in the best physical shape of my life, and did not like losing. That made this diagnosis worse, since I could not accept or even understand how I could be punished like this. My lack of acceptance made everything more difficult. My two younger sisters, Anna and Lisa, who were 6 and 14 at the time, were supportive but in shock. I was their big sister who had always been strong, and now I was in the hospital. I would have to inject insulin multiple times daily, change my diet, and face the risks of short and long term complications from a disease we did not know much about.
Upon diagnosis, I made the decision to dedicate my future to discovering a cure for diabetes.
I would go to medical school as soon as I graduated from high school. I got accepted to the Karolinska Institute in Stockholm, Sweden where I graduated with both MD and PhD degrees after only six years. My research was, of course, in diabetes, but I kept a promise to myself not to let diabetes affect my behavior or require others to adjust to my needs. To do so I kept my diagnosis a secret from everyone except my family and doctors. Even my best friends in high school and my med school classmates had no idea that I suffered from the condition. When I stood before more than 100 people in the grand auditorium at the Karolinska Institute to defend my thesis, the only person outside of my family who knew that I was diabetic was my advisor, Professor Kerstin Brismar. This was because she also happened to be my medical doctor.
After almost 20 years with diabetes, in the spring of 2007, I found myself working long hours for a Scandinavian venture capital fund. I had severe anemia, uncontrolled hypertension and with diabetic macular edema in both eyes. I was not yet 35 years of age, but my body was telling me that if I did not change my behavior, I would not make it to 40. I was forced to “come out” as a diabetic to my partners at the Fund, to my friends and to the industry I was working in. I needed health care and I needed a complete reset of my body. I spent the summer not working, something which had not happened since high school (even as a child I would be busy with tennis tournaments during the summer) and started thinking about my future. The decision to go to medical research and “find a cure for diabetes” which I had made as a 16 year-old newly diagnosed type 1 diabetic, had been modified over the years. I stopped everything to look back at my years in finance and other environments that did not allow me to focus on the long term because each day was consumed by its own report card. A situation like that is not healthy for anyone, but for someone with a chronic disease, and especially someone ashamed of that disease who does not let anyone help, it is disastrous.
I made the firm decision to work in diabetes and to make an impact for others while allowing my body to take center stage and try to fix what was damaged.
At Johnson & Johnson I was given an opportunity to lead what was called the Metabolic Taskforce where I was exposed to all existing products in the category as well as any new products being considered by the pharma, device and consumer divisions.
Unfortunately, the damage to my body had gone too far and I faced the need for dialysis or a kidney transplant. My eyes were healed but I had lost my entire peripheral vision and my night vision, but at least I was not blind. The kidneys were more difficult to fix, but my family came through and I received a kidney transplant from my father in March of 2009.
He saved my life and gave me the motivation to be healthier and to make an impact.
Nine months later I received a whole organ pancreas transplant and my life took an incredible new turn – no more diabetes. I did not realize how bad I had felt for so long – it had been twenty years of insulin injections, highs and lows and constant monitoring. Even worse was the fatigue and the sense of vulnerability I had when on insulin. Now I feel free and ready to enjoy life and plan for the future, which poses new interesting dilemmas for a person like myself, who has lived day by day! Of course there are risks and issues with my new situation. To avoid rejection of my kidney and pancreas, I must take immune suppressants for the rest of my life. Those drugs increase my risk of developing certain kinds of cancer and limit my ability to fight infections. However, I am strong, happy and, importantly, I am surrounded by people I respect, and I am doing what I love on a daily basis!
In this blog, I will be relating parts of my story in more detail as well as how I see the future and what we are doing to try to impact it for everyone. I am not alone in my story – there are so many like me who are struggling with chronic disease. When I founded Lyfebulb together with Riccardo Braglia, Helsinn Group Vice Chairman and CEO and Steve Squinto, PhD, co-founder of Alexion and Venture Partner at Orbimed in 2014, it was with the broad goal to address the gaps I had experienced during my personal journey with diabetes and as a business woman and medical scientist.
My goal for Lyfebulb is to create a global organization that is patient-centric and functions as the voice for a larger population of patients, who have until this point been vulnerable and receptive rather than strong and proactive. We feel that it is patients’ responsibility and opportunity to be innovators, teachers and influencers.
Above all, I want to showcase individuals, who like myself, are not accepting of the role of a passive patient, but willing to take on the challenge of changing the future for themselves and others living with chronic disease.