When she was 35, Dr. Karin Hehenberger received a kidney transplant from her father. Nearly a year later, she received a pancreas transplant from a deceased person. Despite having a supportive family, she felt “alone” in this journey. She was seeking solutions to practical problems as well as connections to others who had gone through what she was going through. She pledged to make sure that other transplant patients would not have to feel this way in the future.
Upon her recovery, Karin founded Lyfebulb, a chronic disease-focused platform that connects patients and industry to further innovation and knowledge about real patient experiences. The mission is to reduce the burden of chronic disease by the power of the patient.
“The connectivity between one patient and another is critical for both well-being and quality of life,” says Dr. Hehenberger, who has the perspectives of both the patient and the medical professional. “To me, getting the transplants was not just about surviving, it was about thriving again.”
Currently, Lyfebulb offers communities for 11 different chronic illnesses, including diabetes, cancer, inflammatory bowel disease, multiple sclerosis, transplantation, migraine, depression/anxiety, substance use disorders, and others.
In fulfillment of the pledge made by Karin, Lyfebulb is launching TransplantLyfe, a digital platform for transplant patients, their care partners and donors to engage with like-minded individuals and learn from each other’s experiences.
The TransplantLyfe platform has four components: a forum where patients, care partners and donors can discuss concerns such as relationships, jobs, and travel as they relate to giving/receiving a transplant; a 1-to-1 matching feature so individuals can speak directly to others like themselves; a resources section with helpful links; and a journal to help patients track their health metrics. The journal can be particularly helpful during a patient’s first year after a transplant, when it’s essential to ensure the body isn’t rejecting the organ.
“This is the only real community for people with a transplant,” says Dr. Hehenberger. “They can learn from one another; they can share their experiences so they can actually teach others. In doing so, I believe they’re going to feel better and have better medical and mental health outcomes.”
For more information on TransplantLyfe: https://transplantlyfe.com/.