DISABILITIES

By Daniel J. Vance

Recently, I interviewed Daniel Vance.

No, I didn't interview myself. A 30-year-old man named Daniel Vance from Columbus, Ohio, was searching the Internet last year for references to his name. Up popped mine. He read my columns about disability on www.danieljvance.com and in time we corresponded.

And he shared the story of his rare and physically painful disability, Loin Pain Hematuria Syndrome (LPHS).

“I refer to [LPHS} as the 'clogged sink' syndrome,” he said in a telephone interview. “You have a loop in your kidney called the 'Loop of Henley.' And you get filtration that builds up there. In my case, the walls of my kidney are too thin and the pressure from the filtration build up causes swelling and pain. And you pass blood in your urine.”

He is one of 3,000 people in the world diagnosed with LPHS, and one of only 300 or so men.

At first, in 1994 at age 19 when symptoms began, doctors thought he had kidney stones. In 1997, his specialist read a research paper written on LPHS by an Ohio State University nephrologist (kidney doctor). A biopsy revealed that Vance had the syndrome.

“LPHS literally turned my life upside down,” he said. “I went from being a very active teenager to someone who couldn't be active. The more I exerted myself, the more pain I felt.” In college he had been involved touring the nation with show choir and dancing.

He said, “They took my driver's license away in 1999, so I can't drive to work. I never know when an episode (of pain) is going to hit me. When it hits there's nothing I can do but curl up in a fetal position and wait for it to pass. I used to visit the doctor for pain episodes once a month, and the pain would last about a week.”

He gained some relief last year when surgeons chemically “killed” his renal nerve. But in time, it will grow back, and with it the pain. He still must take daily “heavy doses” of narcotics.

“I would so much like to be off this and back to the way things were,” he said. “Right now I help run a nonprofit organization on the web dealing with LPHS. Many people I talk to are in the same situation. One day they just woke up and were sick.”

For more, see www.danieljvance.com or http://lphsintorg.freeservers.com