Tanya Angus Has Hope in Growing Battle Against Gigantism
Angus, a 33-year-old from Las Vegas, was diagnosed with acromegaly, a rare pituitary disorder that causes the body to produce too much growth hormone. It affects about 20,000 Americans.
Since 2010, when ABCNews.com first told her story, Angus has grown an inch taller and gained 30 pounds. Before the disease began its destructive course, she was only 5 feet 8 inches tall and weighed 135 pounds.
But for the last year, she has been treated with a drug that has kept the levels of growth hormone in her blood in the normal range.
"This is such good news," Angus told ABC's Las Vegas affiliate KTNV.
Angus has grown so large that she can barely walk and a swimming pool is the only place where she is without pain because she can float there.
"It feels so, like, liberating," said Angus, who is being nearly crushed by her weight. She needs constant care from he family and friends.
Angus has a tumor on her pituitary gland but radiation and three surgeries have done nothing to stop her dangerous growth. One 13-hour operation nearly killed her, and another caused a stroke that took away most of her hearing.
As her body gets larger, so do her other organs. Her heart, lungs, joints and other parts of her body have also grown under the strain of this rare disease.
Doctors say it is one of the worst cases of acromegaly that they have ever seen. Her mother, Karen Strutynski, says it is the "worst in the world."
About 95 percent of the time, the condition is caused by a non-cancerous tumor on the pituitary gland, according to the Pituitary Network Association. Such is the case with Angus, but her tumor is wrapped around her carotid artery, and is inoperable.
Dr. Laurence Katznelson, professor of medicine and neurosurgery at Stanford University Hospital in California and medical director of its pituitary center, did not treat Angus but serves as medical advisor to the onlineAcromegaly Community.
"Everything gets thicker and the facial features become abnormal," he told ABCNews.com last year when Angus was speaking at a national conference.
Fluid accumulates in the body, causing stress on multiple systems in the body. Patients are more prone to cardiac conditions, hypertension and diabetes.
"They are in a lot of pain because they get severe headaches and their joints can be swollen and develop premature osteoarthritis," he said. "Their mortality rate is two to four times greater than the general population."
The disease is not hereditary and happens, "sporadically," he said.
"There is such a slow onset," said Katznelson. "Patients don't present with, 'I am getting bigger.' You look at photos and their history over 10 years and you see it. But when we look in the mirror every day, we don't see the changes."
At 21, Angus was a beautiful young woman who rode horses, danced and had a boyfriend. But one day, she noticed changes in her 5-foot-8-inch frame: Her shoes didn't quite fit, her jeans were too tight and her hands got bigger.
"She was perfectly normal, but by age 22 she had grown three inches," said her mother. "Nobody knew what was going on."
Angus, who lived in Michigan and was a supervisor at a Walmart, began to worry when even her face and head got larger. Her bosses also noticed -- and fired her. And her boyfriend left when his parents began to ask, "Is she a man?'"
Tanya decided to return home in 2002. When her sister picked her up at the airport, she "freaked out," because she didn't recognize Tanya.
The doctor took one look and diagnosed acromegaly.
But now, say Angus and her mother, new treatments are promising. "This gives us renewed hope," said Strutynsk.
And Angus, who has agreed to be part of a documentary on acromegaly, says she too feels optimistic, and encouraged by others.
"I read emails that people send in saying, 'You're my inspiration,' or, 'You are so strong.' If I am helping other people, I feel I can do anything."
For support, go to Acromegaly Community.
For more information on Tanya's story go to her website.