"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."
By the time many are diagnosed, patients have a whole host of medical issues.
Katznelson serves as medical advisor to the online Acromegaly Community, which invited Angus to speak at their April convention. There, she told others how to get grants to help pay for medications, which can cost as much as $100,000 a month.
"There is so much information about cancer and heart disease out there that's easy to obtain," he said. "But if one happens to suffer from a rare disease the information isn't readily available in a coherent manner. We need books and patient groups to support these people."
The group was founded by Wayne Brown, a former history teacher from Buffalo, N.Y., who suffered from years with jaw pain before he was diagnosed with acromegaly in 2004.
Brown, 38, recently published a book, "Alone in My Universe: Struggling With an Orphan Disease in an Unsympathetic World," which is a compilation of his story and those of others.
"Orphan diseases are the stepchild of the medical industry," he said. "Because of that, our people get ignored and run over."
By the time, he sought help, Brown had grown to 6-foot 3-inches tall and gained more than 100 pounds. His shoe size had jumped from a 12 to a 16EEE and his blood pressure was at a high of 160 over 100.
His growth is now under control, but he still has chronic joint pain. "It gets really rough some days," said Brown.
He administers a subcutaneous shot of growth inhibitor once every four weeks.
"Tanya's condition is the worst of the worst," he said. "I am very lucky that my tumor is not that severe. I am where 70 to 80 percent of the patients are."
His own condition prompted Brown to go online and look for resources, but he found nothing. "When I was first diagnosed, I was dreadfully lonely and I went to support groups for people with brain tumors and I didn't fit in," he said.
So he used MySpace and then Facebook to start Acromegaly Community, which now has more than 500 members. They had an enthusiastic response from pharmaceutical companies that recently participated in their Nevada conference. Brown specifically chose that locale so Angus could attend.
"It's really good to meet other people with the same complaints I had," he said. "It's like a cold drink of water on a hot day. It's such a catharsis to talk to people who understand my aches and pains."
The group also addresses the depression which can also be devastating to acromegaly patients.
"To say it's the blues is putting it mildly," said Brown. "I get at least one e-mail a month from people saying that if it weren't for the organization, they would have done harm to themselves."
For support, go to Acromegaly Community.
For more information on Tanya's story go to her website.