After reading an inspirational article* about Kamal Shah , which featured on the alliance’s social media recently, I was reminded about an article I had read earlier this year.
The article , written by Karin Hehenberger, appeared in the Clinical Journal of the American Society of Nephrology. Although Karin is an MD it was not a clinical article. The full article can be read at this link here
Karin had a high status position at Johnson & Johnson. It was while she was representing her company at the annual J P Morgan Healthcare Conference in San Francisco that she became aware that she was not feeling well. Stoically she carried on until it became evident to others that she did not look well. She was in fact in kidney failure .
What happened next was going to change the direction of her life.
Kidney failure was a shock even though Karin had been living with Type 1 diabetes for 20 years. It was now causing her severe nephropathy and resulting in end stage kidney failure.
Unlike her diabetes, having kidney disease was to bring an end to the successful career she had forged in the biochemistry sector.
She had to deal with a life on dialysis and then recover from both a kidney and then a pancreas transplant before she felt able to move on.
Moving on for Karin was to become something which Karin described as being a “Patient Entrepreneur” . It was something which came to her as she thought about the ways she had to adjust her life. She saw opportunities to create products or solutions for patients‘ difficulties. She also found that were other people who thought like her , who because they had “personally lived it” were inspired to provide products etc which could help others in the management of their disease.
Karin realised that there was also an opportunity to bring people together – patients with other patients and patients with healthcare industry. She created an organisation called Lyfebulb and placed it in the context of a growing movement of Patient Entrepreneurs and creating a “bridge” within it.
In the article Karin gives a few example of products created by patients with Diabetes , Crohn’s and Cancer. Her company’s website gives details of many more within the Diseases areas which she has addressed so far. The site can be seen here.
In her article she is encouraging potential patient entrepreneurs with experience of living with kidney failure. Karin is a “venture catalyst”
There are many ways to cope with a life changing illness such as aHUS and kidney disease. Karin found a way to apply her skills in enterprise to find a gap in the market and give her life a new meaning. It is not just a job , it’s a mission , a Patient Entrepreneur Circle of like minded people.
Running a business may not suit everyone, businesses can fail. But scaled to an individual’s preference and supported by others, as Karin was and is, it might be a consideration. For some with a passion for it, it could lead to a life after the car crash of aHUS and kidney disease.
Kamal has been successful at it despite his setbacks, and living a life on dialysis not able to have a kidney transplant.It has given him a different and positive meaning to his life. In return he adds the “plus” in Nephroplus. It Is not just a dialysis provider.
If anyone reading this has had a similar “epiphany” as an entrepreneur and would be willing to share it with others the alliance would be pleased to hear from you.
Len Woodward
aHUS alliance
*article can be read here
