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Leah Sarich – Health Specialist: Nephrotic Syndrome

bt.calgary | posted Tuesday, Jun 18th, 2013

It’s the leading cause of kidney failure in children. It’s called FSGS…and it’s a subset of a kidney disease called Nephrotic Syndrome.

In Nephrotic Syndrome protein leaks out of the kidneys into the urine. Pediatric Nephrologist Dr. Julian Midgley explains it causes swelling in children, makes them prone to infection and can lead to clots in their veins. Treatment includes immune suppressing medications like steroids that stop the leaking of the protein into the urine. But steroids have a host of nasty side effects including weight gain in the children, personality changes, and a lowered immune system which makes these young patients very susceptible to colds and flus. And this can mean everyday childhood activities like birthday parties, even school are challenging situations.

Most children with Nephrotic Syndrome have “Minimal Change Disease” and eventually grow out of the disease and have normal kidney function as an adult. A small subset of patients, about 5 to 10 percent, have FSGS where the filters in the kidney develop scarring. This scarring is permanent kidney damage that lowers kidney function which means patients will eventually require dialysis and ultimately a kidney transplant. The real kicker though? The disease will likely attack even a new kidney because it’s an auto immune disease. Dr. Midgley says he’s seen new kidneys start to leak urine within a couple of hours of transplant.

So you can imagine how devastating the disease is for the child and the entire family. I met Sophia Galbraith who is six years old and was diagnosed with Nephrotic Syndrome and FSGS when she was 2 years old. Her mom Andrea says Sophia has been hospitalized 5 times this year alone. She explains that while Sophia may be well one day, the next she’ll be very sick. Andrea says Sophia may look fine, but she’s slowly being poisoned on the inside.

Andrea has organized a Run and Walk. It’s this Saturday, June 22 at Edworthy Park.

For more information visit: Nephrotic Syndrome


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