For immediate release: Ottawa group advocates for awareness of rare disease, acromegaly

OTTAWA – October 28, 2019 – November 1st is recognized internationally as World Acromegaly Day, and the Acromegaly Ottawa Awareness & Support Network (AOASN) is out to spread the word. The AOASN is a registered non-profit organization that promotes awareness about this rare, life-changing diagnosis, unites patients and their families, as well as advocates for patients’ rights and swift diagnosis.

What is acromegaly?
Acromegaly is a rare, serious condition most commonly caused by a non-cancerous tumour on the pituitary gland. The tumour causes the gland to over-produce growth hormone, resulting in symptoms such as enlargement of internal organs, hands, feet, and jaw, and other conditions like diabetes. There are approximately 2,000 diagnosed cases of acromegaly in Canada, with the possibility of many more suffering without a name for their illness.

About the Acromegaly Ottawa Awareness & Support Network
The AOASN was founded in 2018 by Ottawa resident Dianne Sauvé, an acromegaly patient herself, after realizing that local resources for this disease were almost non-existent.

“Those in Ottawa diagnosed with cancer or diabetes have support groups and a plethora of resources at their fingertips to get them through a scary and difficult time,” says Sauvé. “Most physicians never encounter a case of acromegaly and patient resources are extremely limited. One goal of Acromegaly Ottawa is to help those who feel isolated with this rare condition.”

One of the main objectives of the AOASN is to educate the medical community in Ottawa about acromegaly. The average time to reach a diagnosis is seven to ten years. This is due to several factors such as limited coverage of acromegaly in medical school, and the disease’s wide-ranging symptoms affecting many bodily systems, often ascribed to more common conditions. A fast, simple, and affordable blood test (IGF-1) can help confirm a diagnosis of acromegaly.

Since its founding in 2018, the AOASN’s Facebook group has grown to more than 60 members, many of whom had never met another person with the same diagnosis. In the closed group, patients and their friends and families can discuss their experiences and share information and resources. The public Facebook page promotes their advocacy activities, events, and news, and can be followed by anyone.

The group hosts quarterly in-person meetings and social gatherings, and outreach activities at local venues. Coming in March 2020, the AOASN will host an exhibit at the Shenkman Arts Centre in Orleans, by group member and photographer Santino Matrundola. The exhibit, called “Light of Day,” features portraits of acromegaly patients and explores the patient perspective and experience. Media are invited to attend. RSVP HERE.

Dianne Sauvé and other board members of the AOASN are available for interviews in-person or by phone.

Helpful links:

 


Media contact

Angie Sauvé
angie@quirkcomms.com
613-868-8299

National/International Acromegaly Canada Conference

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.

Continue reading “National/International Acromegaly Canada Conference”

Telling the Acromegaly Story on Film

Being the president of Acromegaly Ottawa Awareness & Support Network comes with responsibilities and work but it also provides me with wonderful opportunities!

Recently, I was approached by a pharmaceutical company who asked me if I would be interested in telling my story as part of a patient panel at an upcoming conference. Being someone who believes that awareness is an important function of my role as President, I wholeheartedly agreed to be part of their panel. This would be the perfect opportunity to spread awareness and educate people about a disease that most people know little about.

This group would be familiar with the disease but I would be in a position to provide them with the valuable patient perspective. They also wanted to do a short video in which I would tell my story. It all sounded fun and exciting and so I agreed.

Last week a team of seven people descended upon my house with a carload of video, lighting, and audio equipment. They even had a make-up artist! I suddenly felt like a celebrity. As the makeup artist primped me for my close-up, I thought about this opportunity I had been given and decided that although I would be telling my story, I would also try to convey to the audience a sense of what acromegaly is and how it can impact the lives of those it chooses to attack.  I wanted to stress that patients are often shuffled from doctor to doctor, sometimes for YEARS, until finally a diagnosis can be made and treatment can begin, and how patients are left feeling alone and isolated with a rare disease that they know little about.

I was one of the lucky ones who was diagnosed early, but not because I knew about this disease. I asked questions of the doctor, I pushed for information knowing I would have to be my own health advocate. The education came after the diagnosis and it was only years later that I gained the confidence to connect with others and become an ambassador to raise awareness of acromegaly and do what I could to support patients.

Today, with inspiration from my acromegaly family, I have accepted this role and hope that the video will educate, inspire, and reach those who can benefit from learning about acromegaly and the patient experience. I would consider it a personal win if even one person who feels alone with acromegaly sees the video and chooses to reach out to a support group. In numbers, we are strong and we are not alone!

The video will be making its debut soon. Keep you posted!

Dianne Sauvé
President, Acromegaly Ottawa