SOUTH OGDEN — Karen Ungerman is a petite woman. One would never know by looking at her that her kidneys, normally the size of her fists, are larger than footballs and are infiltrated, inside and out, with cysts. But of even more concern to Ungerman is that her son, Austin, 10, has also been diagnosed with the disease. She and her husband, Robert, have not yet had their infant daughter tested, although they recognize she has a 50 percent chance of developing the disease. "I have a progressed case of PKD," Ungerman explained in an Aug. 22 interview with the Intermountain Catholic. "Some PKD patients develop kidneys the size of 20-pound bags of potatoes, and some people’s kidneys don’t enlarge at all." PKD stands for polycystic kidney disease, the second most common genetic disease it the world (second only to breast cancer). Ungerman’s father died at 25 with kidneys that weighed about nine pounds. Ungerman was diagnosed at age 3; her son at age 2. "Some PKD sufferers have liver involvement," Ungerman said. "Often, the disease affects adults in their 30s and 40s, and begins with pain in their sides. We break out in cold sweats and our blood pressure rises." It’s the rising blood pressure that often leads to PKD being misdiagnosed, she said. Often, only when a cyst on the kidney pops leading to infection, does an ultra-sound show the enlarged kidney with its multiple cysts. There is no treatment and no cure for PKD. Patients have to keep their blood pressure down so their kidneys won’t have to work so hard. They also must undergo periodic MRAs – magnetic resonance angiograms – to detect aneurisms caused by PKD. Ungerman, 32, had surgery Jan. 17, 2006, to repair an aneurysm in her brain. She now has 40 percent of her normal kidney function. She would like Austin to be able to avoid aneurysms, surgeries, and the pain and discomfort PKD produces. That is why on Sept. 15, Ungerman and other PKD patients and their families and friends will take part in the 2007 Salt Lake City Walk for PKD, a one-mile walk that begins at 7 p.m. at Ellison Park in Layton. Registration for the walk is available online at www.pkdcure.org, or at 6 p.m. at Ellison Park. "The walk will be a fun family event," she said, "with BMX athletes doing demonstrations and refreshments." Ungerman organized the 2007 walk after the 2006 walk suffered some organizational problems. Ungerman is a take-charge woman, who, in an effort to better understand her disease, earned a Bachelor’s Degree in molecular cellular biology at Midwestern State University in Wichita Falls, Texas. "We take blood pressure medications, and there are 16 trial studies of drugs that might slow the progression of the disease," Ungerman said. "Austin will participate in one of those studies. There is a drug, tolvaptin, that has been used to treat cirrhosis of the liver and congestive heart failure that might be a hopeful treatment for PKD. It might help us prevent aneurysms and strokes." Although PKD has affected her life deeply and threatens the well-being of both her children, said Ungerman, who attends Holy Family Catholic Church and St. Florence Mission in Huntsville, "I try to stay positive." As Utah Chapter coordinator of the PKD Foundation, Ungerman said she meets many people with the disease who are in denial. "Twelve and a half million people are diagnosed with PKD," she said, "and Utah has from two to three times more cases than any other state. Even though my cousins don’t live here, I worry about them. They’ve never been diagnosed, even though our great-great grandfather died of an aneurism." Organ transplantation is a possibility for her, Ungerman said, although heart and liver complications of PKD often make transplantation risky. "Now I see my responsibility as raising awareness of this disease," she said. "It is one positive thing I can do." For further information on PKD go to www.pkdcure.org or call 1-800-pkd-cure.
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