Feb. 20, 2001--
For the past two days, we've been visiting a Salt Lake couple devasated by the death of their son.
28-year-old Shane Vander Meide died from a rare and often misdiagnosed disease called Von Hippel-Lindau. It was his dying wish that others might be spared his nightmare.
Though the bizarre illness is deadly, there are survivors trying to beat the odds.
Science Specialist Ed Yeates found one living alone on the banks of the Colorado River.
The key to surviving Von Hippel-Lindau is early diagnosis. That didn't happen in Shane's case. By the time doctors discovered the REAL villain, it was too late.
But for a man living in Moab, Utah,it's a different story, at least for now!
Among these giant surviving cliffs stands 52-year-old Nelson Boschen - a survivor himself!
He found out he had the genetically inherited Von Hippel-Lindau six years ago. It was still a late diagnosis - but early enough that he now has a fighting chance.
NELSON BOSCHEN: "BY THE TIME IT WAS DIAGNOSED IN ME, I HAD HAD MY RIGHT KIDNEY COMPLETELY REMOVED AND ABOUT 35 PERCENT OF MY LEFT KIDNEY."
ED YEATES: "NELSON STILL MAKES HIS HOME DOWN HERE IN THE REDROCKS OF MOAB. BUT VON HIPPEL-LINDAU HAS DRAMATICALLY ALTERED HIS LIFESTYLE."
Spaghetti-like vessels inside his body are growing microscopic cysts and tumors. Most are benign, but some could turn malignant at any time. Headaches, weakness, depression, loss of appetite and more - they're all symptoms doctors at first misdiagnosed as something else.
"IF I HAD KNOWN ABOUT IT EARLIER. IF MY FATHER HAD KNOWN ABOUT IT EARLIER, HE COULD EVEN BE ALIVE TODAY."
The computer almost seems out of place in this pristine environment, but it's here in Nelson's trailer on the banks of the Colorado River so he can develop skills as a graphic artist. He WAS a wildlife biologist for the State - but had to give it up because of Von Hippel-Lindau.
VHL -- the obscure name still mystifies and scares him.
"I KNEW ABSOLUTELY NOTHING ABOUT IT SO IT WAS JUST DUMFOUNDED. -edit to 7:40- AND I JUST SORT OF SAW MY LIFE - MY DREAMS JUST GOING OUT THE WINDOW."
Nelson takes medication and goes into the VA hospital in Salt Lake every few months so doctors can monitor the disease. That's the only way survivors of VHL can keep surviving.
Nelson says you have to stay ahead of the symptoms, trying to out-guess what sneaky move this villain may try next.
"IT COULD BECOME ACTIVE FOR NO APPARENT REASON WHATSOEVER FOR SIX MONTHS, SEVERAL YEARS. THEN SORT OF GO INTO A QUIESCENT STAGE FOR NO APPARENT REASON. SO IT'S REALLY TOTALLY UNPREDICTABLE AT ANY TIME."
Nationally funded research on Von Hippel-Lindau is now underway at selected medical centers around the country.
