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.
World's Tallest WomanThe condition that gives rise to this incredible height is known as gigantism if it manifests during childhood, and acromegaly if it surfaces in an adult. It usually arises when a tumor grows on the pituitary gland. This pea-sized organ is located at the base of the brain and regulates growth. Tumors can prevent the gland from collecting feedback on the levels of growth hormone in the body, leading it to produce excessive amounts of the hormone.
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.
Health Risks of Tallest Woman
Also, up to 60 percent of the patients will have impaired glucose intolerance, with 20 percent suffering from full-blown diabetes.
Bonert noted a number of other possible complications that can arise from the disease, including osteoarthritis, carpal tunnel syndrome, muscle weakness, and, 60 percent of the time, obstructive sleep apnea.
Also, studies have shown an increased incidence of colon cancer in patients with acromegaly or gigantism.
Early Detection May Mean Normal Life
Fortunately, as physicians improve their diagnosis of gigantism or acromegaly, it appears likely that record like those of Allen and Robert Pershing Wadlow -- who holds the height record for men at 8 feet 11 inches -- may stand for a while.
"In the 21st century, we should not see any of these 9-foot giants," said Dr. Donald Bergman, an endocrinologist in private practice in New York City, who is associated with the American Association of Clinical Endocrinologists.
Bonert agreed that quick diagnosis can prevent all of these problems.
"If you treat it, they should have a normal life expectancy," she said. Children suffering from gigantism are unlikely to pick up these complications, while adults who are treated in time shouldn't develop the problems acromegaly can cause.
"The idea is to pick it up early, reverse it quickly before anything develops that you can't reverse," she said.
Early detection is a simpler matter than it used to be -- at least in developed countries. Because of regular monitoring of height, doctors often quickly notice when a child is likely to have a pituitary tumor.
But in older patients, the illness has been more difficult to diagnose because the signs are less apparent.
"A lot of people attribute it to aging. They just think they're getting older and uglier," explained Bonert.
She said that many people attribute the inability to wear their wedding rings to weight gain, and said that adult symptoms are often not diagnosed until a person runs into someone who knew them well but whom they have not seen in a while. But she said recent studies have lowered the average time it takes to detect acromegaly.
Death of Giant Woman
To treat gigantism or acromegaly, the physician will usually try to remove the tumor, which solves the problem. If the tumor cannot be removed, as sometimes is the case, then the patient will need to take medications to control the tumor.
"If you can cure the disease it's better than being on lifelong medication that has to be injected," said Bergman.
But while height record-setters may garner more attention because of their childhood disease, Bonert said pituitary tumors are much more common in adults than in children, "Otherwise we'd have more giants walking around."
A Short -- but Full -- Life
For Allen, increased height meant residence at a nursing home in her final years. The added weight brought about by her stature eventually made it impossible for her to walk, and she fought through a host of health conditions in the months before her death.
But while she may not have had an easy life, she noted in her 2007 interview that her unique condition opened doors to incredible opportunities. And though her life was cut short, some may say she managed to live it to the fullest she could.
"I like my life the way it is," Allen said. "Getting in the Guinness Book of Records really changed my life. It has given me the opportunity to travel all over the world, see places I would only have dreamed of. … and it sort of brought me out of my shell."