When we first met Tanya, she had just journeyed 600 miles by ambulance from Las Vegas, hoping doctors at UCSF could finally stop her body from growing, which is the result of a rare disease called acromegaly. Tanya is as tall as 6'11 before her spinal cord compressed under her weight, which fluctuates between 300 and 400 pounds, according to her mom.
"We know she's not going to shrink, we know that, we're realistic. But to have a little more mobility and get growth under control," Tanya's mom Karen Strufynski said.
Tanya's acromegaly is the result of a brain tumor that's pressuring her pituitary gland, causing it to flood her body with growth hormone. The disease had advanced to a near critical stage by the time Dr. Lewis Blevins first examined her.
"She was in dire straits. She's had a tough life with this disease process," he said.
Blevins decided to first attack the levels of growth hormones in Tanya's blood. His plan called for re-adjusting the dosages of a drug that's effective for many patients, but hadn't worked for Tanya. After roughly two months, Tanya's latest blood work came back from the lab and her mother got the news first.
"He said 'Tanya's growth hormone level is in the normal range.' It worked, it worked," Strufynski said.
"So she'll have some profound metabolic changes over the next couple of months. Improvements in her weight, her body composition, for example," Blevins said.
Those metabolic changes from the new drug Regimin could also provide a window of opportunity. If the improvement continues, brain surgeons may soon be able to attack the root cause of Tanya's condition.
"If we can get control and maybe shrink it a bit, we could maybe do some radio therapy to finish it off," Blevins said.
He says the ultimate goal is to restore Tanya to a near normal life expectancy. It is a dramatic swing for her family, who were told just two years ago that her internal organs could soon shut down and kill her. They're grateful for the 600-mile journey that may have saved her life.
"I told him, 'if I could be right there, I would send you a hug,'" Strufynski said. "I'm just ecstatic that we've got our little girl back."
Our story first aired, Blevins has been contacted by families around the country and gave them advice on the latest treatments for acromegaly.
Written and produced by Tim Didion
