I was diagnosed 30 years ago as a teenager back in Sweden. 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 my diagnosis.
I was shocked and devastated, but receiving my diabetes diagnosis motivated me to work harder, with even more determination, and helped to carve out my life’s path.
My family and I did not know much about type 1 diabetes. 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 and, at that time, I did not see a benefit in sharing or learning from other patients.
Rather, I was scared 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; I never wanted to depend on anyone or anything!
Insulin Dependent At Age 16
To this day, I still consider the day I received my diagnosis the worst day of my life.
There is nothing about diabetes, itself, that I am grateful for. I would never wish this situation on anyone else.
There is a particular 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 be 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, at just 16 years old.
The Complications
My journey with diabetes, 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; although I have remained a fighter and an optimistic person, my experiences with type 1 diabetes 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 would now know I not only had diabetes, but also faced some very serious complications that affected my kidneys, eyes and my autonomic nervous system.
As a result, I spent years undergoing kidney and pancreas transplants, multiple laser treatments on my retinas to save my vision, and a pacemaker implant.
The Accomplishments
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.
There were two foundational concepts that were key:
- patients need patients
- 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 we have grown our total following.
We believe that there are parallels in learnings between chronic disease states, and that 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 (including Jeff Dachis!) to over 100.
While we source ideas and inspiration through patient entrepreneur innovation, our 30+ 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.
Living Today With Diabetes
My life looks very different now than what I could have envisioned at my diagnosis in 1989.
I never became a big tennis star or had a traditional career as a medical doctor or even 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 2.5 years ago, and my other child, Lyfebulb, is thriving with a great team and even greater impact.
All of this has required lots of fighting and lots of pain.
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.
Although the fight is not over yet, I know that I now have people who depend on me. Knowing this makes all the difference in my approach to managing my health.
