By Kathy Walsh
DENVER (CBS4) - A father of two from Louisville is living with a rare, genetic disease. Alport Syndrome causes damage to the kidneys and can lead to kidney failure. There is no cure, but Scott Hinerfeld's kidney function has actually improved.
Hinerfeld is participating in a clinical trial of an experimental drug that is showing great promise. It has made the 42 year old feel normal again.
Hinerfeld is an avid cyclist, climber and snowboarder, but two years ago he was struggling.
"My level of fitness was declining,' he told CBS4 Health Specialist Kathy Walsh. "I started waking up feeling sick."
Hinerfeld had Alport Syndrome, a rare, genetic disease that causes progressive loss of kidney function. For Hinerfeld's brother, Matt, it led to a kidney transplant. It seemed Hinerfeld would eventually need the same.
"It became pretty evident that my kidney function was declining," Hinerfeld said.
But he was directed to nephrologist Dr. Geoffrey Block at Colorado Kidney Care in Denver. Block, Director of Research, was leading a clinical trial of an experimental drug.
"We're studying a medicine called bardoxolone methyl. It's made by a company called Reata," explained Block.
Hinerfeld was the first person with Alport Syndrome to try bardoxolone. Block said, after 12 weeks, Hinerfeld's kidney function stopped declining and actually improved.
"I kind of have chills right now talking about it," said Hinerfeld.
"We've never studied anything like this that makes kidneys better," said Block.
"I don't often say this, but I feel blessed," said Hinerfeld.
Hinerfeld has now been taking the drug for 18 months. He says he feels normal again. He's happy to continue taking a pill a day for as long as necessary. He hopes bardoxolone buys him time until researchers find a cure.
Block calls the drug remarkable and not just for Alport Syndrome. He said it's also being studied to treat polycystic kidney disease and both Type 1 and Type 2 diabetes and researchers are seeing success.
LINK: Reata Pharmaceuticals
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