Entries in Somatuline (1)


New Medication Helps Woman Living with Acromegaly

ABC News(LAS VEGAS) -- 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.

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.

Acromegaly is a rare pituitary disorder that causes the body to produce too much growth hormone. It affects about 20,000 Americans. 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," said Dr. Laurence Katznelson, professor of medicine and neurosurgery at Stanford University Hospital in California and medical director of its pituitary center. "Their mortality rate is two to four times greater than the general population."

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.  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.

Copyright 2011 ABC News Radio

ABC News Radio