Dianne Sauvé was diagnosed with acromegaly in 2012. For over five years, she found support through online Facebook groups located elsewhere in Canada and the US. No support groups existed in the Ottawa area. Upon retirement in 2018, Dianne found she had the time to try do something for other acromegaly patients in Ottawa.
With the help of her daughters, she created the Acromegaly Ottawa Awareness & Support Network Facebook group. After becoming involved with another group in an awareness campaign in Montreal and connecting for the first time with other patients face to face, Dianne knew the time had come to try to make a difference in her community.
Media coverage followed the launch of the “Light of Day” project (a portrait exhibit of Acromegaly patients, by Montreal Photographer Santino Matrundola who is also an Acromegaly patient) and membership in the group rose significantly. Dianne is now working with her executive team to develop and initiate awareness and patient group activities with the goal of offering support to Acromegaly patients and make the disease known and understood by the public.
Since being diagnosed with acromegaly in 2012, Heather Elder has sought information and support to help manage this life-changing condition. She gratefully found these through online patient groups, and was delighted to meet a fellow acromegaly patient in person when she and Dianne Sauvé connected in 2018. After a long chat over coffee, Heather happily become involved in establishing an Ottawa-based support group to bring together local patients and caregivers and advocate for awareness of this rare disease.
Meeting other patients through the “Light of Day” art exhibit has made her more determined to reduce the time from the onset of symptoms to treatment. With an average of seven years to diagnosis, many patients are unable to reverse the damage acromegaly has caused. Early diagnosis can significantly improve a patient’s quality of life—and the key to this is awareness, in both the medical community and the general public.
Buoyed by the enthusiasm of the Acromegaly Ottawa Awareness & Support Network members, she is excited for this opportunity to increase understanding and make connections.
Angie Sauvé is a digital communications specialist in Ottawa, Ontario. Her connection to acromegaly is through her mother, Dianne Sauvé, who was diagnosed in 2012
Angie runs her own business, Quirk Communications, offering digital marketing and social media services to associations and small businesses.
She manages the Acromegaly Ottawa website, social media accounts, and is a moderator of the Facebook group.
Chantale Sauvé is an East Region Lead for Shopify, a facilitator for individuals with special needs, and a cosplay performer. Her connection to acromegaly is through her mother, Dianne Sauvé, who was diagnosed in 2012.
Chantale has spent most of her career in developmental services with a high focus on supports for those living with dual-diagnosis/concurrent disorders and mental health conditions. She continues to pursue work in this field in her free time.She is the Secretary for the Acromegaly Ottawa Awareness and Support Network and a moderator of the Facebook group. As a founder, she is highly invested in the continued growth of this initiative.
Lise Racicot is a caregiver to her husband Dan. Dan was diagnosed with acromegaly in December 2008 after suffering with uncontrollable diabetes and severe joint pain since 1996. A loved one suffering from a chronic condition has an impact on the entire family, emotionally and financially.
Lise is an strong advocate for her husband and a firm believer that the caregiver and patient voices and their lived experience is key to moving forward effective change in health care from education to system improvements. In her role as a caregiver, Lise had an opportunity to take part in the Change Foundation initiative The Caring Experience.
” Being a caregiver is like white noise; it follows you wherever you are, whether you are at work, at the gym, driving home, in a meeting with colleagues or lying awake in the stillness of the night. Care-giving is not a responsibility or a job you apply for, it is something that comes unbeknownst to you on a silver platter with a 24/7 commitment.”