"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.