Karin Hehenberger (NJE, NYO 99-00) is no stranger to the burdens of chronic disease. At age 16, she was diagnosed with Type 1 diabetes, the complications of which have led to kidney and pancreas transplants, as well as a pacemaker.

Motivated by her experiences, Karin founded Lyfebulb: a platform that connects individuals affected by chronic disease for support and connects patient-entrepreneurs with leading health care companies to help solve unmet needs.

From the unique perspective of an entrepreneur, medical doctor, and patient, Karin discusses with us the importance of community, the role of personal experience in assessing new technology in the health space, and what she sees as Lyfebulb’s greatest impact.

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Your mission at Lyfebulb is predicated on patient empowerment. How are you able to reduce the burden on patients suffering from chronic disease?

There are two big empowerment components to Lyfebulb.

Number one is connectivity. When patients are first diagnosed, there can be a huge sense of loneliness. That was one of the worst things for me. When I was diagnosed with Type 1 diabetes, I felt very alone and that no one else had it as bad as I did.

By connecting patients who are living with the same chronic diseases, we can reduce that sense of loneliness, and hopefully make that person feel much better. We can learn so much from each other’s experiences. Patients need to talk with other patients – not just doctors – to live better lives.

Number two is inspiring through innovation. Lyfebulb is an innovation accelerator for patient-entrepreneurs.  We believe that we can reduce the burden of disease by encouraging and embracing innovation that is derived directly from the patient.

The insights, and even solutions, that patients have to their own problems need to be forwarded and positioned so that companies can hear and see them. By listening to them, encouraging them, and giving them a platform, we can empower patients even further and absolutely transform their lives.

How important of a tool is technology and social media to those with chronic disease? How are you using it to push your mission forward?

It’s incredibly important. Many people express themselves and connect with others virtually. And when you’re living with a chronic disease, it’s not always possible to be out and about. You’re often homebound.

When we began, it was just me telling my story and helping others who were living through something similar. With the internet and social media, we’re able to scale that connectivity and use a “buddy system” to reach a much larger audience.

As an example, I recently published a post on LinkedIn. Over the first few days more than 35,000 people read it, and about 500 people commented. That's the kind of impact that makes me really happy. It means that our message is resonating. It's very important to us not just to have a large community, but to have an engaged community.

You have worked at McKinsey, nonprofit, pharma, and biotech companies. How has your experience influenced you in what you're doing now?

Everything I have done in my career so far has influenced me tremendously in what I do at Lyfebulb. I always say that my personal experience with disease made me realize that I needed to connect with other patients. But my career – starting with my academic career, training as a medical doctor, to being a scientist and working on the corporate side – has taught me that there is a certain structure and set of principles to effecting innovation and managing teams.

McKinsey taught me how to discipline my thinking and refine my presentation technique. At McKinsey, you learn incredibly well how to take a concept and introduce it to a new group of people. You learn to sell your own ideas in a compelling and smart way.

What I also learned was that I was mistaken during my earlier career never to allow my own experience with my disease to affect my decisions. For example, when I was working on technology in the diabetes space, I would take myself out of the picture. And that was a mistake. When I started my company, I realized that I needed to integrate my own experience with disease in any kind of assessment. The insights and solutions that are derived from personal experience are incredibly important when it comes to assessing the potential of new technology.

What’s your measure for success?

The most important impact is how patients engage with us. The emails, the phone calls, the messages on various social media platforms of how people feel that Lyfebulb is helping them in their personal journey with disease – those are really impactful to me.

We have always said that Lyfebulb’s mission is not to cure diseases but to take the patient from just living with a chronic disease to thriving with a chronic disease.

I'm still living with 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. 

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.

To achieve that, we want to deliver return to our shareholders; continue to develop more partnerships with pharmaceutical and biotech companies; and develop our digital platform. That way we can continue to grow our community and increase that level of engagement.

If you could travel back in time and offer yourself words of encouragement following your diagnosis, what would you say?

I would say, "Diabetes may be a disability. But it can become a huge ability. It is something that, right now, seems like the worst thing that could ever happen to you. But if you take this as an opportunity, it can really transform your future, and make it even more significant. This disease may seem incredibly hard right now, but you're not alone. There are people who are like you, and it is possible to have a full and really fantastic life. You should never, ever give up on living well.”