What is Acromegaly?

Our disease, Acromegaly, is a rare disorder that occurs in all populations but that can vary by severity, age of onset, and gender. When it occurs in children/adolescents it causes pituitary gigantism. Acromegaly/pituitary gigantism is caused by a tumor of the pituitary gland at the base of the brain, that produces excessive amounts of growth hormone (GH).

First symptoms include overgrowth of the extremities (hand and feet), facial shape changes (coarsening of features), weight gain, fatigue, sweating, swelling and gastrointestinal issues. Long term disease is associated with serious damage to vital systems and organs such as the heart, in addition to metabolic impairment and an increase in mortality.

In Acromegaly diagnosis and treatment rely on the availability of hormonal testing, brain imaging, neurosurgery, radiotherapy and biological medications. Indeed one of the main problems associated with acromegaly is that it has a gradual onset and patients may have suffered from the disease for many years before a diagnosis is made. Individuals who don’t have easy access to advanced facilities can suffer an even longer duration of unexplained disease effects due to late diagnosis.

Acromegaly occurs in the U.S. at a rate of 2-11 new cases per million, per year, and between 20,000 and 45,000 are living with acromegaly in the US. However, as symptoms of acromegaly can be confused for other conditions, it is believed that more patients remain undiagnosed.

Acromegaly has a heavy health burden, impairs physical appearance, increases mortality and is associated with chronic quality of life decrements.

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