Life at 7 feet 7 inches was not easy for Sandy Allen, who passed away on Wednesday at the age of 53. But during her shortened life, Allen tried to make the most of the illness that allowed her to set a world record as the tallest woman.
"I don't blame God for making me this way," Allen told "20/20's" Bob Brown during an interview last year. "I'm very proud of being tall. And what I try to do -- if I can help even one person in my lifetime with their attitude toward life, then it's all worth it."
But as doctors learn more about what made Allen so tall, they are also building upon what is known of the problems that this increased stature begets.
In children, this leads to excessive growth, because the growth centers in the body are still open.
In adults, where the condition is much more common, the growth receptors are closed, so the person will not grow. But a number of other symptoms occur, like thickening of the bones, coarsening of facial features and enlarged feet and hands.
"In adulthood, it's a very insidious disease, and it takes nearly 10 years to pick up," said Dr. Vivien Bonert, clinical coordinator of the Pituitary Center at Cedars-Sinai Medical Center. "Pediatricians pick it up because they go off the [growth] charts. Then you pick it up immediately."
With increased growth comes an increased chance of early death. Untreated, the disease will increase mortality by two to five times, and ultimately it will cause a number of other illnesses.
Sixty percent of patients will have enlargement of the heart, according to Bonert. That will often lead to dysfunction of the left ventricle, affecting how the blood is pumped around the body, as well as arrhythmias and high blood pressure.