Acromegaly (ac-ro-MEG-a-lee) is a rare condition in adults resulting from excessive amounts of growth hormone, most commonly caused by a benign tumour in the pituitary gland. It is one of many disorders associated with the pituitary gland and pituitary tumours.
Approximately 3 to 4 persons in one million are newly diagnosed with acromegaly each year. This means that approximately 60 people in each one million have acromegaly. In total, there are at least 2,000 Canadians affected by acromegaly with still more waiting to be diagnosed.
One of many patients’ biggest concerns is obtaining an accurate diagnosis so that proper therapies can begin. Awareness of acromegaly, as with all rare diseases, is low even among healthcare providers, who may never encounter a patient with acromegaly in their career! This means that acromegaly patients often suffer from the disease’s effects far longer than they would with a quicker diagnosis. Accurate diagnosis can take years because of the slow progression of the disease and its varied symptoms, which include abnormal growth, swelling of the hands, feet and facial features, increased spacing of teeth, deepening of the voice, headaches and problems with vision. Many other complications such as arthritis, diabetes, sleep apnea, hypertension, colonic polyps, carpal tunnel and enlarged organs such as the heart, can be co-morbid with acromegaly. Acromegaly also has hidden family, work, social and psychological impacts, often causing those affected to suffer in silence and isolation.
November 1st, Acromegaly Awareness Day, is our day to spread the word about this rare condition and promote early diagnosis and treatment, which in turn can reduce the risk of complications, improve symptoms and break the cycle of isolation.
Together, let's raise the profile of acromegaly in Canada!
There are many sources of acromegaly information available. This link is to a report prepared for the National Organization for Rare Diseases (NORD). It provides an excellent overview of the disease.
Canadian Pituitary Patient Network
P.O. Box 5
St Davids, Ontario L0S 1P0
Email: info@canadianpituitary.org
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