Teen takes on deadly disease

Teen takes on deadly disease

Susanne Tso
Special for The Republic
Sept. 13, 2007 01:35 PM

Chelsea Krob's kidneys are making her heart ache.

Chelsea, a junior at James Madison Prepatory School in Tempe who will turn 17 on Saturday, has polycystic kidney disease (PKD), a life-threatening inherited condition for which there is no treatment or cure. Already, it has claimed the lives of her paternal grandmother, an uncle, and now threatens her father and his identical twin brother. Both men are on dialysis and awaiting transplants.

The Ahwatukee Foothills teen knows that could be her fate, too, if scientists don't find a cure in the next decade or so.

According to the PKD Foundation Web site, the genetic disorder occurs more often than cystic fibrosis, Down syndrome, muscular dystrophy and sickle cell anemia combined. It affects 600,000 Americans and 1.25 million people worldwide. Children have a 50 percent chance of inheriting the disease from an affected parent.

Despite its prevalence, few people have heard of the disease and comparatively little money has gone into researching a cure.

Chelsea wants to change that. That's why she is taking part in the second annual Phoenix Walk for PKD on Sunday at DC Ranch in Scottsdale.

"I believe a cure is coming up really soon," she said. "I started a team for the walk and my team goal is to raise $5,000."

That's about $1,500 more than she raised for the walk last year.

She has reason to feel hopeful. New drug trials show promise for slowing progression of the disease, which causes cysts to form and multiply on kidney tissue. Unchecked, kidneys can grow to the size of footballs and eventually shut down, according to PKD experts.

Chelsea and her father James have a common, aggressive form of the disease that causes early hypertension and is often characterized by back or abdominal pain, blood in the urine, kidney stones and frequent urinary tract infections. They are at increased risk of strokes and brain aneurysms. One of James' brothers, also a PKD sufferer, died of a brain aneurysm at age 34.

"A lot of times people will pass away from complications of PKD and not know they have it at all," said James who commutes between his Tempe home and Los Angeles where he works as a compliance officer for California Credit Union. He began dialysis in May after learning that a potential kidney donor wasn't a compatible match.

Although Chelsea has been able to lower her blood pressure through dietary changes, she knows there's only so much she can do to stave off the disease.

"It's hard knowing that I have some limitations that other kids don't have," she said. "I guess it's one of the burdens I have to carry. But as long as I eat right and keep a positive attitude, it doesn't affect me that much right now."

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