Beaconsfield resident's has battled the rare condition for 21 years
© Photo courtesy of Bianca Bowen
To date, there is no known cure for Nephrotic Syndrome.
Surrounded by numerous doctors and family members in a Halifax hospital room, Bianca Bowen was four years old when diagnosed with a rare condition - Nephrotic Syndrome (NS).
"I wasn't old enough to understand but I knew from that moment on I wasn't going to have a normal childhood," said the 21-year-old.
Trips in and out of Montreal hospitals, years of medication, and even hair loss are just some of the challenges Bowen has faced during her 21 years of life.
Nephrotic syndrome is triggered by defects from kidney filters (called glomeruli), causing protein to leak from the blood and into the urine. As a result, patients experience low blood protein, swelling around the eyes, feet and hands, and weight gain.
According to the American-based NephCure Foundation, approximately five out of every 100,000 people are diagnosed each year with this kidney-damaging disease. More than 2,400 children are diagnosed with NS each year.
With it come the many potentially-fatal relapses. Since her diagnosis, Bowen has suffered 14 relapses - her most recent in May. Despite the hard-reality she faces, Bowen says she isn't half the woman she is today without her daily treatment.
"Through continuous relapses and treatments, I have become a stronger person; I have learned from every battle I have been put through. My biopsy and treatments - prednisone, cyclophosphamide and others - have shaped me to become the independent woman I am today," said Bowen.
Bowen has maintained her health as best she can by ensuring a low sodium diet and cleanliness, without which another relapse is likely.
"I am always careful about hygiene because if I get a cold or a cough, it has a much different effect on me than it does for any other individual. A cold, cough, or simply a small infection can put me into a relapse and cause me to be medicated for months. For some people this may seem extremely challenging but for me it has just become a part of my lifestyle to be cautious," said the Vanier College student.
But there's only so much a healthy diet and hygiene can help. There's no protection from the long-list of symptoms associated with her prescribed medications - a battle in and of itself, according to the 21-year-old.
"To start off with, immunosuppressant such as Prednisone has caused me to have what they call "the moon face" and overwhelming feelings of happiness and sadness. The mood changes are a common symptom of prednisone as well as tremors, acne, insomnia, cold sweats and the constant feeling of hunger. Throughout the years I have trained myself to trick my mind into not feeling some of these symptoms, although some come and go and there is no stopping it," said Bowen.
It was during her 13th relapse when beset by an unforeseen symptom - hair loss. With the increase in stress and the plethora of medication, Bowen began losing her hair.
"Being 21 years old, in school and working part-time, it's tough dealing with the syndrome alone, but when hair loss comes into play that changes your whole life. I always had long blonde hair and losing most of it was a huge shock to me," said Bowen.
While there's no known cause or cure for NS, the foundation says a patient's longevity is, in effect, a coin-toss.
"People respond to NS in different manners. Treatments address symptoms - some patients respond to the different off label therapies - which hopefully improve one's quality of life. Others are not so lucky and the disease can progress to loss of kidney function which requires dialysis or a kidney transplant. We are working hard to support research seeking improved treatments and the cause and cure for these debilitating kidney conditions," said Henry Brehm, executive director of the foundation.
For more information on the syndrome, visit www.nephcure.org.