Several members of Acromegaly Ottawa recently travelled to Toronto for the second National/International Acromegaly Canada Conference, held at the Sheraton Gateway Hotel from September 27 to 29, 2019.
This learning and networking event provided attendees with an opportunity to discover more about acromegaly, its physical and emotional impact, medical treatments, and opportunities to raise awareness and participate in innovative research.
It also offered a chance to meet with fellow acromegaly patients and their support networks—to some, this would be their first time connecting with others with the disease, which with a rare condition can be a life-changing milestone.
The insightful presentations and panel discussions touched on many facets of acromegaly, from diagnosis to treatment to lifestyle.
Here are some highlights:
- Ali Imran, professor of medicine, discussed the pituitary gland and its functions, along with which hormones to monitor (including TSH, T4, and T3), various factors that can affect hormones, and the effects of hypopituitarism. Of note: it’s often best to test hormone function within two hours of awakening, and patients should try to be consistent with the time of day at which they get their bloodwork done.
- Chris Summerville, Certified Psychosocial Rehabilitation Recovery Practitioner (CPRRP) and co-chair of the Canadian Alliance on Mental Illness and Mental Health, explored depression and acromegaly, stressing the importance of patients being open with how they’re coping with all aspects of the disease. He shared the CHIME framework for personal recovery in mental health: connectedness, hope & optimism, identity, meaning, and empowerment. He also explained the difference between depression and apathy syndrome; the latter may have a link to pituitary illnesses and can be treated with stimulants.
- Shereen Ezzat, clinician-scientist with a focus on endocrine oncology, announced the Canadian Acromegaly Registry. Part of a larger international effort, this tool will bring together various stakeholders—scientists, government regulators, medical professionals, and patient groups—to characterize the Canadian acromegalic population. It will support a much-needed push for early testing, diagnosis, and intervention. The registry will help show how acromegaly can initially present, shifting the medical community’s perception of acromegalics beyond the common image of extreme physical changes—something Dr. Ezzat likened to diagnosing pregnancy during labour. The aim is to establish a high standard of care and to help improve quality of life for patients.
- Sylvia Asa, endocrine pathologist, presented new research that distinguishes different types of pituitary tumours based on granularity. This could affect treatment recommendations, as each type responds more favourably to different medications. She also discussed a shift in terminology to better reflect the impact of pituitary tumours: from pituitary adenoma, which indicates the tumour is benign, to pituitary neuroendocrine tumour (PitNET), which reflects the damage these tumours can do. While benign is used to mean non-cancerous, its true definition is cause no harm…clearly not the case with many PitNETs.
- Ally Prebtani, internist and endocrinologist, spoke about acromegaly and type 2 diabetes. He explained the causes and effects of the condition and described a variety of ways to manage it, including lifestyle choices and medical treatments.
- D. Faccinetti, Chairman and CEO of Pituitary World News and acromegaly patient, discussed the role the platform plays in awareness and advocacy. The site offers a wealth of information on pituitary disorders, medical innovations, and scientific research, as well as presenting patient stories and interviews with specialists.
- Mark Logtenberg, actor, arborist, and acromegaly patient, shared his patient journey—including an uplifting look at acromegaly’s positive influences on his life—and encouraged Toronto-area patients to connect with him to form a local support group.
- Lori Kingdon, endocrine nurse, provided insights into acromegaly and the role an RN plays in a patient’s journey. She offered some guidance for patients, such as coming to appointments with a list of specific questions, bringing a support person to appointments to help keep track of information, and documenting symptoms in a journal.
- Jack Bondy, clinical research coordinator, explained how medical trials are conducted and encouraged patients to look for opportunities to join clinical studies by speaking with their doctors or looking online at sites such as gov.
- Daphne Adelman, clinical nurse specialist, explored the far-reaching effects of endocrine disorders and emphasized that patients must advocate for themselves to achieve the best possible quality of life.
In addition to participating in robust discussions around these topics, delegates took part in honouring an individual who has devoted themselves to bringing awareness to acromegaly. Conference co-organizer Deanna Badiuk presented the Tanya Angus Princess Award to Santino Matrundola, a talented Montreal-based photographer, acromegaly patient, and Acromegaly Ottawa member. Santino created the powerful Light of Day photography exhibit, showcasing photos and stories of acromegaly patients from across Canada. (The exhibit will be featured at the Shenkman Arts Centre in Orleans in March 2020.)
Deanna also announced the creation of a national awareness and advocacy group, Acromegaly Canada. This not-for-profit organization will act as a resource hub for Canadian patients and their networks, and guide them to their local support groups. More details and a website are forthcoming.
The Ottawa team wishes to extend a huge thank you to the conference organizing committee and the sponsors for putting on an incredible event. Here’s to another successful conference in 2021!
Vice-President, Acromegaly Ottawa