Tanya Angus Takes Giant Step in Uncontrolled Growth

PHOTO: Seen in this July 7, 2010 file photo, Tanya Angus suffers from gigantism.PlayABC News
WATCH Hope for Tanya Angus

At 6-foot 11-inches tall and 344 pounds, Tanya Angus, who has a rare disease that causes gigantism, may finally have slowed her uncontrollable growth.

The Las Vegas 32-year-old was so large that her family didn't know how they would transport her to a California hospital last October, where they hoped to find treatment. A former swimmer, she could no longer enjoy the pool because it took several people to get her in the water.

Angus had swelled to 450 pounds, but because of this new medication -- Somatuline -- she has dropped 100 pounds and her growth hormone levels have plummeted, as well.

"My heart is enlarged, everything in my body is enlarged," Angus told ABC's affiliate KTNV.

Her heart, lungs, joints and other parts of her body have also grown under the strain of this rare disease -- acromegaly.

Now, Angus is receiving a bumped-up dose of one drug, which doctors are monitoring to see if her case -- one of the worst in the world -- can help others. She is now in a brand new medical textbook for nursing students.

"They have to go above and beyond what a normal acromeglic patient would take," said her mother Karen Strutynsk.

Since then her levels of growth hormone have dropped from 1,000 to 602, according to her mother. When they reach 300, she can consider herself on maintenance.

Just recently, Angus was able to attend an acromegaly conference at the Mirage hotel in Las Vegas to bring awareness to the disease.

"Sometimes yeah, I'll feel really down about it, but to me the most important thing, I have to tell, I have to tell the people," she said.

Her mother said others who suffer from the disorder say, "Tanya is our hero."

Acromegaly is a rare pituitary disorder that causes the body to produce too much growth hormone. It affects about 20,000 Americans.

"Everything gets thicker and the facial features become abnormal," said Dr. Laurence Katznelson, professor of medicine and neurosurgery at Stanford University Hospital in California and medical director if its pituitary center.

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."

Centuries ago, these patients would be recruited to join the circus. One well-known actor with the condition was Richard Kiel, who played the villain's henchman "Jaws" in the James Bond movies, "The Spy Who Loved Me" and "Moonraker."

About 95 percent of the time, the condition is caused by a non-cancerous tumor on the pituitary gland, according to Katznelson, who did not treat Angus. In her case, the tumor is wrapped around her carotid artery, and is inoperable.

The disease is not hereditary and happens, "sporadically," he said.

Acromegaly Has an Insidious Pattern

"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.