Acromegaly Patient From Ottawa Starts Disease Community on Facebook

According to a story from the Ottawa Citizen, Dianne Sauvé, who is 60 years old, learned six years ago that she has the rare condition acromegaly. Since she learned that she had it, Dianne has not kept quiet. She has made several strides to help spread awareness in the Ottawa area about acromegaly, and has also formed a group called Acromegaly Ottawa on Facebook where patients from the area can meet each other, mobilize, and share their experiences.

About Acromegaly

Acromegaly is a condition that is characterized by the excessive release of growth hormone in the body after the growth plates have already closed. The disease is caused by overproduction of growth hormone by the pituitary gland, which usually occurs as a result of a tumor of the pituitary gland or of another organ in the body, such as the lungs or adrenal glands. Symptoms include enlargment of the feet, hands, nose, jaw, and forehead, deepening voice, and thick skin. The condition can occasionally cause serious complications like heart or kidney failure, colorectal cancer, diabetes, and high blood pressure. Treatment may include radiation therapy, surgical removal of the tumor, and a number of medications to suppress growth hormone production. Most people see their symptoms disappear after successful treatment, and life expectancy is not affected. To learn more about acromegaly, click here.

Inspiration Through Community

Many people with acromegaly go through life without ever getting diagnosed, which is easy to do if the condition is not causing serious symptoms. Dianne felt inspired to facilitate the development of the acromegaly community in Ottawa after a photo exhibit by photographer Santino Matrundola recruited some patients in the Ottawa area with the condition. Santino has acromegaly himself, and was shocked when he woke up one day blind in one eye because of the disorder.

Dianne felt compelled to participate in the exhibit, which was intended to raise awareness about acromegaly. She felt isolated by the condition and felt a strong desire to meet others who had it. Her diagnosis with diabetes, inability to lose weight, and rapid increase in foot size were all signs that something was off.

Acromegaly Ottawa is growing steadily and Dianne has been reaching out to local leaders to help establish November 1st as Acromegaly Awareness Day for Ontario province. British Columbia and Nova Scotia have already declared their own respective awareness days for the illness.

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