Tanya Angus, an advocate and spokesperson who suffered from an extreme case of a rare genetic condition called acromegaly, died Monday after catching a cold and developing a tear in her heart.
Acromegaly, which is often referred to as gigantism, is a condition that doesn’t allow its host to stop growing. At the time of her death, Angus, 34, was 7 feet 2 inches tall and weighed 400 pounds.
Before her diagnosis, Angus stood at 5 feet 8 inches tall and 130 pounds, rode horses, strutted down runways, and lived a normal, healthy life. However, after age 21, a tumor caused a massive amount of growth hormone to be released into her body after wrapping around a pituitary gland.
Angus’ condition was one of the most extreme doctors have seen, and though there was a little hope last August when her growth hormones dropped to nearly normal levels. The growth factor levels, during the worst parts, reached 3,000 for Angus—for a healthy person, the normal range is around 250.
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Angus reached out to other people around the world who suffer from the same condition through her website, tanyaangus.com, and was able to speak at the Acromegaly Conference in Las Vegas last year.
Acromegaly affects around 20,000 people in the United States, the rate of which is about 5.3 cases per 100,000 people per year. It affects mostly middle-aged people, and there is usually a six year lapse between the onset of symptoms and the diagnosis. Early diagnosis can help doctors either remove the tumor that causes the disease, or use pre-emptive treatment. Angus underwent surgery three times to have her tumor removed, but because it also wrapped around her carotid artery, it proved inoperable.
Her family plans to keep Angus’ website running as a resource for those who suffer from acromegaly and their families.