Dr. Karin Hehenberger has spent her life at the intersection of science, medicine, and innovation. Long before she would become a transplant recipient - and later, a patient advocate - she was already deeply committed to improving human health.
A competitive athlete growing up in Sweden, Karin Hehenberger’s life changed at age 16 when she was diagnosed with type 1 diabetes. Overnight, a disciplined and ambitious teenager was forced to contend with a chronic illness she did not yet have the tools, or the language, to process. “I saw the diagnosis as a personal failure,” she says. “Something I needed to overcome privately, not talk about.”
Rather than slowing her down, that mindset propelled her forward. Determined not to let her illness define her, Karin focused intensely on achievement. She went on to study medicine at the Karolinska Institute where she developed a strong interest in endocrinology, metabolism, and chronic disease.
Her academic path took her beyond Europe and into the United States, including advanced research and training at the Joslin Diabetes Center, where she deepened her expertise in diabetes science and patient care.
From there, Karin built a career across the biopharmaceutical and life sciences sectors, holding roles focused on clinical development and medical strategy, translational research, and advancing therapies in diabetes and metabolic disease—although very few around her knew she was also managing the disease she worked in. “I never shared that I had diabetes,” Karin says. “I thought it might make me look weaker or biased. I believed success meant proving I could perform like everyone else without needing help.”
By 2007, years of prioritizing her career over self-care eventually took a toll causing diabetic complications including kidney failure, hypertension, and macular edema. Eventually in 2009, she underwent a living-donor kidney transplant at NewYorkPresbyterian/Columbia University Irving Medical Center, receiving a kidney from her father.
The surgery itself was successful, though recovery was not immediate. Karin experienced delayed graft function and days of severe swelling and illness following the procedure. “I almost lost hope, and I remember this moment: I had said, ‘I just don’t want to do this anymore,’ and there was a young nurse who almost screamed at me and said, ‘You cannot give up, you are a strong woman!’” That evening, the kidney started working, and Karin was discharged the next day. Nine months later with NYP/Columbia still managing her recovery, she underwent a pancreas transplant in Minnesota - an intervention that dramatically changed her ability to live without insulin and regain stability.
Over the years that followed, Karin continued to face the cumulative consequences of long-term illness and immunosuppression. She experienced repeated serious infections, including sepsis complicated by C. difficile and multiple Mohs surgeries for skin cancer. In addition, she had a hip replacement surgery. Each setback underscored the reality that transplantation is not an endpoint, but part of a lifelong journey.
Throughout all this, Karin was still able to have her daughter, Liv. Her birth marked not just survival, but the possibility of a fuller life - one that gave Karin renewed clarity, purpose, and motivation to keep pushing forward. “That will always be the silver lining,” says Karin. “Motivation is critical. I would never take care of myself as well if it were just for myself, but I have to take care of myself for her.”
During the COVID-19 pandemic, her kidney function declined again, eventually progressing to end-stage renal disease. “During the evaluation process, I had to go through an angiogram, and the angiogram dye killed whatever kidney function I had left. I had never been so sick,” Karin recalls. She was placed on emergency dialysis for four days and then spent a month in a hemodialysis center in preparation for her surgery. On April 19, 2023, she received a kidney from her sister at NewYork-Presbyterian, and the transplant was a success.
When Karin first learned she would need a transplant, what she wanted most was connection to another patient like herself. Her medical teams and clinical knowledge could guide her through procedures, risks, and more. But what was missing was the perspective of someone who had already stood where she stood. “I wanted to talk to another patient,” she says. “Someone who understood what it was actually like - emotionally, practically, day to day.”
That new understanding stayed with her long after transplant: while providers and researchers bring essential expertise, patients bring a different kind of invaluable knowledge. “Patients need other patients,” Karin explains. “And patients can be innovators, side by side with providers and industry. They offer insights no one else can unless they’ve walked in those shoes.”
That realization became the foundation for Lyfebulb, created in 2014 to connect patients and care partners through shared experience, education, and community - particularly for those living with chronic disease or navigating transplantation. The platform elevates patient voices, not just as anecdotes, but as experts with ideas that can transform care, research, and innovation. “I wanted to build something I wish I had had,” Karin says. “A place where patients could learn from one another, connect honestly, and feel less alone during some of the most difficult moments of their lives.”
For Karin, philanthropy is not just about giving back; it is about building forward. She is deeply grateful for how far medicine and transplantation have come. But gratitude, she believes, cannot be the end of the story. “We’ve come a long way,” she says. “But we’re not quite there yet. Survival is no longer the only measure of success. Quality of life matters. Long-term outcomes matter. The lived reality of patients - before, during, and long after treatment - must be part of how progress is defined.”
Karin sees advocacy as a form of responsibility: speaking up where gaps remain and helping shape what comes next. True advancement, she believes, only happens when patients, providers, researchers, and industry work side by side, pushing together toward better solutions.
“Patients carry insights no one else can,” she says. “If we don’t bring those voices into the conversation, we miss opportunities to do better.”