Lyfebulb: “Aha!” Idea For Managing Chronic Disease

Karin Hehenberger has led a lucky life.

She grew up in Sweden, graduated from an international high school in Paris, attended medical school and earned her Ph.D. in Stockholm, and did post-doctoral work at Harvard.

Karin Hehenberger

In Cambridge she became friendly with Business School students. At 26 she was hired by McKinsey as a healthcare consultant. Then it was off to Wall Street, to work for a hedge fund.

But Karin’s life has been filled with bad luck too.

In her teens she was diagnosed with Type 1 diabetes. She kept it secret from everyone except her family. If others knew, she thought, they’d view her as “weak.”

Over the next 20 years, she suffered complications. Diabetes affected her eyes; her kidneys and pancreas were failing, and she had a pacemaker. “I was a walking stroke risk,” Karin says.

Her father Michael — an IBM executive who had moved to Westport with his wife and Karin’s younger sister Anna, when she was in high school — donated a kidney. Karin’s eyes were treated with a product she’d worked on in her healthcare days. Her vision was saved; she did not dialysis.

She also made the list for a pancreas transplant. On New Years Eve 2009, she got a call: Get to Minneapolis immediately. A second pancreas was available.

But it was damaged in transit. “Frozen and dejected,” Karin says, she got ready for the new year.

Providentially, almost immediately she got another call. Another pancreas was on the way.

Karin Hehenberger, after her pancreas transplant.

On January 2, 2010, Karin’s life changed. She has not injected insulin since. She’d performed that life-saving ritual 5 to 10 times a day — and spent many more hours checking her blood sugar.

As she recovered, Karin thought about her career.

She had never connected with any other diabetic. “Patients need patients just as much as much as we need doctors,” she realized.

And, she says, “even though I was so involved with innovation and technology, I’d never allowed my own experience to be part of the assessment. I didn’t want to think I was biased.”

Gradually, Karin says, “I understood that patients can be innovators. We know the problems. We can have solutions.”

That set off a light bulb in her head. In 2014 she started Lyfebulb. The name combines that idea of innovation with the optimism of “life.” (The “Y” resembles a light bulb — and the logo colors are the same as Sweden’s.)

Lyfebulb’s mission is to “reduce the burden of living with chronic
disease through the power of the patient.”

Karin started out thinking only of her experience as a transplant recipient. “It’s very complex to be alive because someone else died, or gave up a part of themselves,” she explains. “But we were all alone. I thought there needed to be a community of transplant patients.”

As she tried to find ways to empower people with transplants — “not just to take charge of their lives, but to be valued and respected” — she realized there were commonalities with people suffering from chronic diseases who did have “communities” (for example, cancer patients and those with inflammatory bowel disease).

Through digital solutions, innovation challenges, events, panel discussions, workshops, social media, newsletters and blogs, her company works with patients in 11 disease areas: transplantation, diabetes, cancer, multiple sclerosis, chronic kidney disease, IBD, migraine, substance use disorders, mental health, psoriasis and chronic cough.

Karin Hehenberger and her daughter, in Westport.

Lyfebulb — which, since COVID, Karin has run out of her Westport home — is a for-profit company. It pays patients for their insights, and uses their ideas to build products for the marketplace.

For example, a young diabetic realized he did not always remember the last time he dosed himself.

“It’s not easy to keep track of,” Karin notes. “You’re making 300 decisions a day related to food, checking blood sugar and insulin.”

The simple solution: a pen cap that allows people to record the time and amount of each dose.

“Diabetics want to live without thinking about their disease,” Karin says. “Doctors want them to test constantly, to optimize glucose control. Those two things completely contradict each other.”

But without seeking patients’ input and insights, no company would think to manufacture an insulin pen cap like that. Three now do.

Similarly, Karin says, Lyfebulb learned that diabetics wanted an insulin device that’s less bulky and institutional-looking than the standard gray ones. Nothing stopped that — except no one ever asked.

“That’s a consumer insight,” she notes. “In every other field, consumers drive product development. In healthcare, consumer marketing has always been an afterthought.”

Karin’s goal is for Lyfebulb to “replace Facebook for health information.” On the ubiquitous social media platform, she says, “there’s no moderation. Anyone can say anything about a product or remedy. It’s not safe.”

Karin’s goal is for Lyfebulb to “replace Facebook for health information.” On the ubiquitous social media platform, she says, “there’s no moderation. Anyone can say anything about a product or remedy. It’s not safe.”

This month, Lyfebulb launched TransplantLyfe, an online engagement platform for the transplant community.

Lyfebulb ensures scientific and medical reviews. “We want to harness the power of a crowd to change the way people deal with chronic disease. We take over when doctors and nurses leave,” Karin says.

“You’re not alone. You’re not different,” she says to people living with chronic diseases. “You can be helped by people just like you.”

5 responses to “Lyfebulb: “Aha!” Idea For Managing Chronic Disease

  1. Crowd Sourcing is the gift of the Digital Age.
    Curated for safety & reliability is the work and the challenge.
    Clearly Karin continues to do brilliant work in spite of all her obstacles.
    For all humanity,Thank you!

  2. Gerald F. Romano, Jr.

    Great that your sharing and helping others.
    Gerald F. Romano, Jr.

  3. Fascinating. As someone whose life was turned upside down by CFS—and having learned to dramatically change gears—I would suggest you consider adding that to the mix since doctors still know so little and a large number of people are impacted. Thanks.

  4. Thanks, Karin, for the work you are doing!
    Fred, I too have CFS….certainly turns ones world upside down

  5. i love this. thank you Karin for all that you do.