The Acromegaly Canada Board of Directors is passionate about fulfilling the organization’s mission: to raise awareness through education while providing a network of support for patients and their families across Canada.
After being diagnosed with acromegaly in 2008 and realizing there was no support system in Western Canada, I started the Vancouver Acromegaly Support Group. Now a well-funded support group that has organized two large international conferences, it services most of Western Canada, while also maintaining close relations with patients across North America and Europe.
My focus is to bring people with acromegaly together, so we can feel less alone, support each other, and realize we deal with similar issues. To help us understand our disease better, our group offers presentations from a variety of medical professionals, giving us the opportunity to take better care of ourselves and improve our quality of life.
I strive to bring awareness and knowledge to the general public in Canada and beyond, speaking with the media and working closely with my Member of Parliament, Mark Strahl, to have Acromegaly Awareness Day approved by Parliament.
All this has led to the founding of Acromegaly Canada. This new national organization will work on making acromegaly more widely known, promoting better care, and sharing knowledge between the medical community and patients.
I support our growing team of fellow acromegalics in getting information to people who need help and befriending those who need to know they are not alone!
I live in Surrey, BC, and have also been involved with Vancouver Acromegaly Support Group, which has expanded through Western Canada. I have helped in both Canadian acromegaly conferences (2017 in Richmond, BC, and 2019 in Toronto) and have helped by taking meeting minutes, sharing my story, and just being there to assist wherever I’m needed.
I was diagnosed with acromegaly in September 2006, a month before my 56th birthday. I waited on the surgery because my endocrinologist had trouble locating my very small pituitary tumour. For five years, I was given octreotide injections every 28 days by a nurse who came to me. In January 2011, I retired, and in July 2011, I had my surgery. I was lucky: the tumour was very small. They got it all and my numbers were within normal parameters within months. I am no longer taking any medications to control my numbers. Although my arthritis is bad, I soldier on—like many of us!
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I have been living with acromegaly and its effects for about 50 years. I started to have issues related to the pituitary tumour in middle school (headaches, excessive sweating, and joint pain). I had seen many doctors over the years regarding the headaches; they thought it was sinus infections. Then I got lucky: I needed to change my family doctor. My new doctor took one look at my x-rays and said, “You have massive bones.” He asked me some questions related to my shoe size change, wanted me to bring in old photos of myself, ran blood tests, and scheduled an MRI. I had a massive pituitary tumour that had grown into my sinuses. I was diagnosed and had surgery to remove my tumour in 1994, and had follow up radiation treatment in the spring of 1995.
I am a structural engineer who has worked on many power, water, and wastewater projects around the world: the United States, Egypt, Iraq, Libya, and Canada. I was in Libya when the civil war broke out, and my company transferred me to Vancouver, BC, in 2011.
I have had a good life with my wife, Kathy, and our four children, and now it includes three grandchildren. I am lucky to have support from my family during my journey with acromegaly.
I am a seasoned acromegalic with 30 years of experience living with the disease. I was first discovered at age 3 when my mother started my diagnosis process. I have McCune Albright Syndrome, acromegaly, and prolactinoma and am currently an active rare disease patient advocate serving my respective disease communities.
When I am not advocating, I am a software designer living in Vancouver, BC, a proud cat mama, and a house plant collector.
Chair, Communications Committee
After being diagnosed with acromegaly in 2012, I sought information and support to help manage this life-changing condition. Online patient groups have been a vital resource for me, and I was delighted to finally meet a fellow acromegaly patient in person in 2018. Together with an incredible group of patients and family members, we established the Acromegaly Ottawa Awareness & Support Network.
Since then, I’ve been fortunate to meet others with acromegaly through the “Light of Day” art exhibit and conferences in New Orleans and Toronto. I believe that by sharing our journeys with this rare disease, we can educate each other and show the medical community the varied faces of acromegaly. The more we all know about the range of symptoms, the earlier the diagnosis, the more varied our treatment options, and the better our quality of life.
I’m excited to now be part of the newly formed Acromegaly Canada. Pulling from a career in communications and marketing, I’ll help our team raise awareness, increase understanding, and establish a network of support across the country.
Chair, Fundraising Committee
I live in Ontario with my husband and two girls. I have an educational background in social work and psychology and am a certified behaviour therapist.
Raised in a family of self-employment and entrepreneurship, I learned about all aspects of business, from scheduling, invoicing, and working with the general public, to writing policies and procedures manuals. I enjoy planning and love to think outside the box. I have many ideas and the experience to help guide Acromegaly Canada through unique, fun, and exciting fundraising events and campaigns.
Living with acromegaly can be a challenge at best, but together we can help spread awareness, while making new friends along the way. Together we can learn to live our best lives. I look forward to working with you all.
Chair, Family and Caregivers Committee
My husband, Bill, was diagnosed with acromegaly 25 years ago. Even though we have had some challenges, we have had a good life together.
Born and raised in the Chicago suburbs, I earned a degree in English education and taught at the community college level. I have been a writing tutor and an exercise class instructor. When our four children were in grade school, I volunteered as an elementary school health room aide, library aide, and kindergarten parent helper. I helped facilitate gifted and talented reading programs. My interest in fostering creative problem solving led me to become a Destination Imagination team coach and Camp Invention Director.
I was the “parent in charge” during my husband’s multiple overseas assignments, the last of which was a job transfer to Vancouver, BC, in 2011. We became involved in the Vancouver Acromegaly Support Group in 2013. Canada has become our new home, and we became permanent residents last year. I am looking forward to helping Acromegaly Canada build a strong start, and hope that I can be useful on the Family and Caregivers Committee.
Patti M. Hall
I am a writer, collaborator, book coach and podcaster.
My memoir, Loving Large: a mother’s rare disease memoir was published by Dundurn Press in 2020.
I am the mother of a young man with gigantism who was diagnosed in his teens and together we became sidekicks to walk the medical journey of his treatment together.
I was born in Kingston, Jamaica. I attended Queens High School, then the University of the West Indies Hospital School of Physiotherapy. My husband, Winston, and I migrated to Canada in 1977. We have lived in Cambridge, Ontario, since moving to Canada. I worked at the Cambridge Memorial Hospital and in the Home Care system until my retirement. We have two children and four grandchildren.
I was diagnosed with a pituitary tumor in 2014. Once diagnosed, I started reading about acromegaly and connected the dots that I had many of the conditions associated with acromegaly. I had surgery a few months later to remove my tumor. The surgeon was unable to successfully remove the entire tumor. I was started on Sandostatin injections post op. These were increased to two per month, then I was also put on Cabergoline. The dosage was gradually increased, but unfortunately my IGF-1 kept increasing, so in 2019 I had my second surgery to remove the residual tumor. Fingers crossed: I have been off all medications since my surgery.
I am hopeful that through Acromegaly Canada I can meet other people with this condition in southwest Ontario and possibly be part of a local support group.
After suffering symptoms of acromegaly for eight years, I was finally diagnosed in 1994. I had tumour removal surgery twice over the next two years. Poor follow-up with my doctor resulted in symptoms lasting years afterward, including joint pain and severe cluster headaches.
After finding one of the best endocrinologists in Canada, and being put on the best medications available, my life has reached a level of normalcy.
Many years went by with a feeling of loneliness, that I was fighting a battle no one could understand. Was there anyone else out there like me? A meeting with my doctor in Vancouver resulted in a life-changing situation. I found out about the acromegaly support group in western Canada and its founder Deanna Badiuk. She was an inspiration and a much-needed lifeline.
I decided that I, too, should be a voice for acromegaly patients. I am happy to be part of this organization and know that no one else has to feel the loneliness that I felt.