APPS informs, supports, and empowers Alberta pituitary patients,
caregivers, and health-care professionals to help patients live fulfilling lives.
AcroCovid 2 is gathering information to measure the effect of Covid-19 on the daily lives of those living with acromegaly. Click here to participate.
The survey takes about 5-10 minutes to complete and is available in 6 languages.
AcroCovid 2 is being conducted by the World Alliance of Pituitary Organizations (WAPO) in partnership with the International Society of Endocrinology (ISE).
The World Alliance of Pituitary Organizations (WAPO) released a poster this October for Pituitary Awareness Month to highlight 8 diseases caused by pituitary tumours.
Download this poster and share it far and wide with health-care professionals or others in your community. Every bit helps!
November 1 is Acromegaly Awareness Day.
Acromegaly is a rare hormonal disorder that occurs when the pituitary gland produces too much growth hormone over time. In 95 percent of cases, acromegaly is the result of a non-malignant tumour of the pituitary gland. In rare cases it may be caused by a tumour in the lungs, pancreas, or adrenal glands. Although acromegaly generally affects middle-aged adults, it can strike at any age. In children, this condition is often referred to as gigantism.
The enlargement of bones and tissues, particularly the hands and feet, is a common sign of acromegaly. Over time, people will begin to notice their rings, shoes, or gloves no longer fit. They may also notice an enlarged tongue or more widely spaced or misaligned teeth. Or they may notice other changes to their facial features, such as a protruding jaw or brow, thicker lips, or coarsened skin.
Because the physical changes associated with acromegaly occur gradually, often over several years, those with this condition may go undiagnosed for some time. At least 2,000 Canadians are affected by acromegaly, with still more waiting to be diagnosed. Acromegaly is usually treated with surgery, medication, or radiation.
Acromegaly symptoms can vary from person to person but generally include:
If you are experiencing one or more of these symptoms, please see your doctor.
Acromegaly trivia: The term acromegaly comes from Greek words meaning “extremities” (akros) and “big” (megas). The term was proposed in 1886 by Pierre Marie, a French neurologist, who published the first description of the disease and its pathology.
Pfizer conducted the AcroVoice study between November 2017 and July 2018 to understand how patients with acromegaly defined disease activity and treatment success.
Advocacy and support groups, including APPS, helped find patient volunteers to participate in the study. 100 patients with acromegaly in the United States and Canada took part.
In telephone interviews, patients identified five factors they considered to be important in describing disease activity:
A similar study, called ACRODAT, was carried out with doctors who treat acromegaly.
Find the full article—access is free—here: https://link.springer.com/article/10.1007%2Fs11102-018-00933-9
Copyright 2019 Alberta Pituitary Patient Society