Kidney disease and Senior Loken Syndrome

Kerry Kijewski, a 38-year-old woman living in Ontario, Canada, was born blind, as was her younger brother. As a teenager, she discovered that her blindness was due to a genetic condition that also affected her kidney health. Like her brother, she had to undergo a kidney transplant. She shares her story about her kidney disease and how she now puts kidney health education at the forefront of her life.

For the first twelve years of my life, it was solely blindness. However, within a few years, symptoms of weight loss, extreme fatigue, nausea, stomach cramps, shakiness, excess thirst, frequent need to urinate, and intense salt cravings increased. I was anemic by twelve when I was discovered to be in end-stage renal failure. My kidneys were underdeveloped and no longer functioning. It was then discovered that the genetic condition that had been the cause of my blindness from birth was actually part of a broader syndrome, a rare one known as Senior Loken Syndrome. I was on dialysis for less than a year, first home peritoneal and then hemodialysis until receiving a kidney from my father in 1997.

My family and I knew nothing about kidney disease until my diagnosis.

Our education was swift but thorough, learning about dietary needs and vitamins, and other ways to manage symptoms during treatment. We had to learn quickly and by necessity.

First me, then my younger brother who will be put on dialysis and receive a transplant from our mother, then another, years later, receiving a kidney from a deceased donor on the transplant list. The nephrology clinic has been the place most helpful over the years. Specialists, nurses, dieticians, and social workers have always been there, with expert knowledge and continual support to see us through, and always happy to answer any questions we’ve had.

Starting with my family, I have been involved with the Kidney Foundation of Canada in fundraising, education, and peer support, off and on, since first being diagnosed. As a writer and public speaker, I have gone on to bring awareness to family and friends and the public more widely, whatever I can do to help educate others on kidney health and around issues of possible treatments, and the importance of organ donation.

Our kidneys perform important tasks such as removing waste from our blood and excess fluid from our bodies. We all take kidney health for granted, that’s including me and my family until our kidneys quit working for us. Most people are never confronted with the realities of renal failure and never really understand what our kidneys even do for us which is why this campaign is so necessary. I share the actions our kidneys perform and the things we can all do to keep them working, such as diet and exercise, such as watching sodium intake, and high blood pressure. While my family’s experience was with genetic kidney disease, kidney disease it can happen to any of us. And we must know the signs and symptoms to watch for, and what to do if we notice any of them.