Today is Acromegaly Awareness Day, an opportunity to teach Canadians about this rare disease.
Today is Acromegaly Awareness Day, an opportunity to teach Canadians about this rare disease.
VANCOUVER, Nov. 1, 2018 /CNW Telbec/ - Acromegaly is a rare disease in adults which is difficult to recognize due to its slow progression and varied symptoms. Less than 2,000 cases are currently diagnosed in Canada, with many more patients still awaiting. While diagnosed in 3 to 4 persons per one million per year in Canada, acromegaly is actually present in 60 persons per one million.1
Caused by a benign pituitary tumour, acromegaly leads to abnormal skeletal and soft tissue growth. Typically, the first signs of acromegaly are changes in ring and foot size, changes in dental bite, new gaps between teeth, joint pain, excessive snoring and/or sweating. Complications commonly include headaches, vision problems, arthritis, diabetes, hypertension, colonic polyps and enlarged internal organs such as the heart.1 “Acromegaly also has hidden family, work, social and psychological impacts, often causing those affected to suffer in silence and isolation for a long time because of the significant impact on the mind and body, and because it is so rare,” says Brent Baker, a founding member of the Canadian Pituitary Patient Network and an acromegaly patient himself.
In spite of the challenges of acromegaly, patient ambassadors across the country are using their experience to bring awareness and support to Canadians who may also suffer from the disease. “Being an acromegaly ambassador has been a major drive for me. After being diagnosed with acromegaly, I felt isolated, frustrated, confused and, at times, hopeless. We are not all at the same stage of this disease, but we certainly should not feel alone,” explains Peggy MacDonald, Founder of the Atlantic Acromegaly Support Society.
Last month, fellow acromegaly ambassador and Montreal photographer Santino Matrundola launched Light of Day, an art exhibit dedicated to shining the light on how patients experience and overcome this ‘invisible disease’. The project included a single photograph of each of the eleven participating acromegaly ambassadors, along with a short story describing the unique experience each has had with this condition.
Deanna Badiuk-Black, President and Founder of the Vancouver Acromegaly Support Group, describes the ultimate objective for acromegaly ambassadors as building awareness in the hope that those with this condition can be diagnosed as soon as possible. This way, patients can build knowledge and seek appropriate support.
Patient support in Canada is provided via the following associations: Canadian Pituitary Patient Network, Vancouver Acromegaly Support Group, Alberta Pituitary Patient Society, Atlantic Acromegaly Support Society and the Acromegaly Ottawa Awareness and Support Network.
Reference:
- National Institute of Diabetes and Digestive and Kidney Diseases. Endocrine Diseases. Acromegaly. Available at: https://www.niddk.nih.gov/health-information/endocrine-diseases/acromegaly. Accessed October 2018.
SOURCE Canadian Pituitary Patient Network
