Urological defects often go untreated

A surprising number of babies are born with urological birth defects. Locally, they don't get much attention because people won't talk about them. Internationally, few formal humanitarian efforts address them.

That's according to Dr. Catherine deVries, who more than a decade ago founded International Volunteers in Urology. The group has since changed its name to IVUmed as a nod to the fact that it takes more than physicians to solve the problems. And they've expanded their focus from providing care in underdeveloped countries using volunteer doctors, to include an education outreach within Utah and a Web-based, reach-everywhere education series.

The Salt Lake-based organization is "still the only one that does this work," said deVries. "No one else is addressing the problems of urinary tract, bladders, kidneys and genitalia." Dire as the need is internationally, even locally it's overlooked. People think they're the only one and they don't necessarily feel comfortable talking about it or even seeking care."

People are more likely to seek help for their children, although that's not the case in all countries. Women are neglected here and overseas, sometimes because they simply don't seek help.

As for how common defects are, deVries uses this example: 1 in 150 boys is born with a penis with the hole in the wrong place. But plastic surgery can create a new tube and make look and function normal. That's just one type. Defects range from fairly simple to complex situations where the bladder is exposed to the abdominal wall or is even outside the abdomen.

American women experience stress urinary incontinence at high rates. Like the other conditions, they are solvable, but fixing them requires talking about them and recognizing that they are common, she said. "When I was training, no one discussed prostate or breasts. Now it's OK." And that awareness has saved lives.

In many places, children die for a lack of X-ray imaging, without which there can be no diagnosis. Here, "we have pretty good treatments for almost everything we see here. In another country, if you survive infancy, you might be pretty old before you start to address the problem." Children, she adds, die of kidney failure for lack of prevention, diagnosis and care. "X-ray turns out to be really important for preventing kidney failure and death."

The education programs are designed to help primary care doctors understand more about urological problems and determine when to make referrals. One of the issues there, however, is that there are few urologists in Utah and almost all of them are on the Wasatch Front. There are only two females in those ranks, as well: deVries and Dr. Lisa Stout, who are trying to recruit others.

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