Woman With Gigantism Gets Help for Brain Surgery

Sometimes Tanya can squeeze in to the passenger seat of their minivan, but since she has the legs of a seven-foot-tall person, it would have been too painful to make the five-hour trip to California.

Acromegaly Affects Organs, Too

"The tumor has been growing from the time Tanya hit puberty," said Strutynski. "Her back is collapsing due to the overgrowth. As she grows her bones weaken and they break down. She is so big, her spine looks like a boomerang."

"When she grows, everything in her body grows -- her lungs, kidneys, bladder," she said. "Her body is literally having a hard time and she is so uncomfortable."

In more than 98 percent of the cases, acromegaly is caused by a benign tumor of the pituitary gland that causes it to secrete excessive growth hormone, according to the Pituitary Network Association.

Acromegaly is not that rare. The University of Maryland Medical Center reports six cases in every 100,000 people, but the association says many cases go undiagnosed or under-treated because doctors are not educated enough about the disease.

Two celebrities with the syndrome are Andre the Giant, the French wrestler who died in 1993, and Richard Kiel, who starred in several James Bond films in the 1970s as "Jaws."

If acromegaly is not diagnosed and treated, it can lead to serious damage to vital organs, such as the kidneys, liver, thyroid gland, spleen, pancreas, and parathyroid glands.

Symptoms generally develop slowly over years. Left untreated, it results in altered facial appearance and enlargement of the hands and feet.

In Tanya's case, the medications and prior surgeries have failed to stop the growth.

Her shoes -- 15-1/2 at the moment -- have to be custom-fit and her ring size has jumped from 6-1/2 to 20. Like others with same condition, she has headaches, tiredness and sleep apnea. She wears an oxygen mask at night.

The tumor has also caused arthritis and diabetes insipidus, which makes it hard for her body to maintain hydration.

Though she was once able to walk, her knees can no longer hold her weight, so she is mostly confined to a reclining wheelchair. Lying flat on her back is not only painful, but dangerous because it puts too much pressure on her fragile organs.

Tanya Angus Has High Spirits, Despite Pain

Tanya is on multiple drugs, including a cold, thick-Vaseline like medicine that her mother injects once a month. Much of the medication is for her excruciating pain.

The family has health insurance, but they have already spent $200,000 of their own money on her care. The medicines alone cost $45,000 a month.

"My husband is running out of CDs," said Strutynski. "We bought a 22-foot motor home to travel east, and bought it on a loan and there wasn't enough for a downpayment, so he traded in his Corvette."

Everything in her home is custom made, from her reclining wheelchair to the enormous bed with a specially-padded mattress.

As a former horseback rider and swimmer, Tanya finds being weightless in the backyard pool therapeutic, although it takes two people to get her in the water.

But her spirits are extraordinary, according to her soon-to-be-godmother Tina Valle, who rented an apartment to Tanya and her sister and now runs Tanya's website.

"Karen and Allen [Strutynski] came and wanted a lease for their daughter and told me she had gigantism," said Valle, 53, who lives in New Mexico.

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