Valley Breeze

The Valley Breeze & Observer 02-07-2019

The Valley Breeze Newspapers serving the Northern Rhode Island towns of Cumberland, Lincoln, Woonsocket, Smithfield, North Smithfield, Pawtucket, North Providence, Scituate, Foster, and Glocester

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2 SMITHFIELD FEBRUARY 7-13, 2019 | VALLEY BREEZE & OBSERVER | SMITHFIELD SCITUATE FOSTER GLOCESTER SMITHFIELD – John Zhawred needs a kidney and his sister, Lisa Bouchard of Cumberland, will do anything to help him find one. A 49-year-old Smithfield resident, Zhawred was diagnosed with a rare genetic kidney disease called Alport Syndrome in December of 2015 dur- ing a routine physical with his doctor. His symptoms of microscopic amounts of blood in his urine had gone undetected for years, and the accompanying hearing loss was thought to be a side effect from years working at Miller's Auto Body in Cumberland. During the doctor visit, his doctor noticed high levels of creatinine, a waste product from the breakdown of muscle tissues filtered through the kidneys, at three times the normal level. Zhawred, a mostly healthy family man who led an active life- style working two jobs, had kidney failure. "I found out about the kidney disease, and one year later I was on dialysis," he said. Zhawred spent nearly three years doing at-home peritoneal dialysis, which uses the abdomen to remove toxins from the body in those with kidney failure. He can no longer work and is on disability. He now undergoes hemodialysis, where the blood is circulated and cleaned outside of the body, three times a week for three hours at a time in a clinic in Johnston. "I'm tired and frustrated. I can't do what I used to do," he said. The new treatments require special medication that comes with a list of complications that leave him tired. The father of two and grandfather of three said missing out on family occasions has been hard on him. There is no cure for Alport Syndrome, and treatment includes dialysis or transplant. Bouchard is leading a campaign to help her brother find a living kidney donor. She said she's made flyers and will do anything to get her brother a kidney. "It's his life. I'm not going to stop until he gets a kidney," Lisa said. Alport Syndrome is genetic, passed down the family line. In general it affects men more severely than women. Their mother, an Alport car- rier, had a kidney removed 15 years ago due to an unrelated tumor, but is healthy with her remaining kidney. "We are all born with an extra kidney, and you can live a happy, healthy life with only one after becoming a donor," Bouchard said. Both of Zhawred's children, Sahvannah and Jacob, carry the gene. All have the telltale blood in their urine, but only John is experi- encing kidney failure. Because of this, his family mem- bers can't donate a kidney, though Sahvannah tried. "I did the test and matched but I got a call two days later from the doctors saying no, he'd just get it back," Sahvannah said. Speaking with The Valley Breeze Local family with rare kidney syndrome looking for donor By JACQUELYN MOOREHEAD Valley Breeze & Observer Staff Writer BREEZE PHOTO BY JACQUELYN MOOREHEAD JOHN ZHAWRED sits with his family at his Smithfield home. From left, Mark Bouchard, Mackenzie and her mom, Sahvanna Zhawred Davison, John Zhawred, his grandson Finley, Wendy Zharwed, her granddaughter Ryleigh, and Lisa Bouchard. See SYNDROME, Page 19

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