POULSBO — Betty Bennett sifts through a thick stack of family photos. She knows them all by heart. They are uncles, grandfathers, mothers, sisters, daughters and sons, and she tells her family lineage flawlessly as if she’s told it a thousand times before.
But there is one cloud that hangs over these stories. It’s called Polycystic Kidney Disease (or PKD) and it’s been taking members of her family for at least seven generations. She and her sisters struggle with it daily, her son is a carrier and she holds the burden of someday knowing the fates of her two young grandsons.
But all is not lost.
“This isn’t a death sentence, it’s something you can work with,” Bennett explained.
This month Bennett and many of her family members from around the state will participate in the first ever “Walk for PKD” in Washington State Sept. 29.
The 2.8-mile walk around Greenlake is an event to raise spirits, awareness and money for PKD. The trek will likely be very difficult for family members living with the disease, for whom even a quick trip to the store can be an exhausting event.
“It might as well be climbing a mountain,” Bennett commented.
But, she said, making people more aware of this disease and supporting research that may someday find a cure is all the reason she needs to climb that proverbial mountain.
Although PKD affects 600,000 people nationwide — more than cystic fibrosis, muscular dystrophy, hemophilia, sickle cell anemia and downs syndrome combined — it receives relatively little attention.
It is a disease that causes painful cysts to grow on the inner and outer walls of the kidney. A healthy kidney is the size of a fist but Bennett’s sister, Rebecca Finch, who suffered kidney failure from PKD 12 years ago, had a kidney removed that was 21 inches long.
The most common side affects of PKD are extreme fatigue, kidney failure and aneurysms. Because kidney function is so essential to many other aspects of a person’s physiology, PKD often causes a whole host of other health problems.
“On my good days I’ll have the feeling like I’m coming down with the flu,” noted Christlyn Hill, Bennett’s other sister who also lives with PKD.
The sisters say one of the hardest aspects of the disease is that they look relatively healthy to most people, but inside the disease takes a huge toll.
“I quit work in 1993. People I worked with would say things like ‘Why don’t you stop by the grocery store on your way home?’ Or ‘Why don’t you make a doctors appointment when you get home?’ They had no idea that by the time I walked out the door and drove home I’d be so tired I’d have to sit in the car for half an hour just to be able to walk in the front door.”
“I get the dirtiest looks from people when I take a handi-capped parking space at the store,” added Finch.
The sisters are the grand daughters of Earl and Madge Jull who were the first English family to immigrate to Poulsbo in 1925.
The family began to become aware of its history of PKD when Madge Jull passed away from the disease. Bennett said she’s managed to trace PKD through death certificates and medical records up the maternal line of her family tree for at least seven generations. And because the family can trace the disease so far into its history, they have been widely studied in the PKD community, which is trying to pinpoint the disease’s origin.
Bennett, who suffers from tennis ball sized cysts in her kidneys but who still has kidney function, has been actively involved with the national PKD Foundation, and said all of the research and work is worth it.
“I turned 60 years old at the national PKD conference in Portland this year,” noted Bennett. “What better place to spend my birthday, I was there trying to save my son and daughter.”
Despite the emotional roller coasters and physical pain the sisters have been through, they are a close-knit family and try to take their disease in stride and even laugh and make jokes about their condition. The Poulsbo family has named their team for this year’s PKD walk “Challenge” and although they know the relatively short walk could take them all day, they say the accomplishment will be worth it.
“When we decide we want to do something we’ll do it, like this walk, but we’ll probably be tired for a week afterwards,” Bennett said. “We’ll do it one step at a time and each step in memory of another family member.”
For more information about PKD or to contribute to team Challenge, contact Betty Bennett at Bettyjer@aol.com or go to www.pkdcure.org.