Acromegaly Awareness Day: Why it is important

What Is Acromegaly?

Acromegaly is a rare disease that results from excessive secretion of growth hormone (GH) from the pituitary gland, usually caused by an adenoma (excessive growth of normal cells). It has serious, life-altering implications for the patient and can impact quality and longevity of life. Acromegaly is treatable. Early diagnosis is key to treatment success.

Acromegaly is characterized by a broad range of manifestations. A recent study has identified three manifestations that were frequently present at diagnosis: morphologic manifestations (83.7–87.9% patients), snoring syndrome (81.4% patients), and fatigue (79.2% patients). The study also reported that there is a discrepancy between patient- and physician-reported manifestations (see table 1).

Clusters of symptomsFrequent symptoms
as reported by patients
Frequent symptoms
as reported by doctors
Morphological changesEnlarged hands
Enlarged feet
Facial changes
Articulation of the jaw
Metabolic complicationsExcessive sweatingThyroid disorder
Erection disorder
Vaginal dryness/amenorrhea
Symptoms related to the size of the tumor massVisual-field disorder
Symptoms associated with a comorbiditySnoring/sleep apneaArthropathy/back pain
Glucose intolerance/diabetes
Fatigue and weight gainFatigue
Table 1: Frequency of some manifestations of the disease at the time of acromegaly diagnosis as reported by patients and doctors

Acromegaly Awareness Day

Acromegaly Awareness Day on November 1st was launched in 2015 by Jill Sisco, President of Acromegaly Community (USA), in recognition of Tanya Angus and others who have passed and who brought awareness to the disease. Tanya Angus passed away on January 14, 2014; she was 34 years old. Tanya Angus was a patient that was forthcoming with her acromegaly history and created awareness around acromegaly, through social media, TV and a website.

Years later, we still have approximately 80% of patients receiving a diagnosis too late to resume a full normal life. This is not acceptable and there is a need to continue awareness activities. This is particularly true given the fact that treatments discovered in the last ten years make a huge difference, and a significant portion of us can now be in remission.

Reference

For more information about how to improve early detection, you can read this paper.

Researched and written by André Parent and Dianne Sauve

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