The Vancouver Acromegaly Support Group
Like most health conditions, the affects of acromegaly reach beyond its physical implications. Emotional and intellectual adjustments are sometimes needed to help cope with the realities acromegaly can produce. The following article shares the journey of two women and their vision for a patient support group.
Vancouver Acromegaly Support Group – How it all Began…
by Crystal Gagnon, RN BScN, Endocrinology Research Nurse
After accepting a position in Vancouver as an Endocrinology Research Nurse, I never anticipated the great impact I could have on a patient’s life. However, that position began with a lot of frustration due to my own lack of knowledge and experience with Acromegaly patients.
As I began to understand more about the disease and its effects on patients, I quickly realized the magnitude of isolation and lack of support these individuals experience. In this regard, I knew that there was only so much I could do. A support group was needed.
At this point I met Deanna Badiuk, a patient with Acromegaly. She too had a dream of developing a support group and was highly motivated. I was thrilled we were on the same page and welcomed the help!
After some research and consulting my pharmaceutical representatives, I was advised to ask for an educational grant. We did this and were given a start-up amount, enough to hold two meetings per year! With the help of Deanna, we picked our first venue and held our first meeting – five patients attended! It was a touching meeting, filled with chatter and controlled chaos!
To say the least, we were so glad to have met each other. We now have a mission and are developing our group to impact more lives affected by Acromegaly. It was the right time and the right place with the right people that made this happen and we are all so grateful!
My Dream, My Vision, My Reality
by Deanna Badiuk, Patient Group Leader
I sat down recently and began to read our first Endogroup Newsletter that was published for our support group. “WOW!” is what came to mind. I was awestruck by how far things had come. I went from just wanting to meet one other person with Acromegaly, to having an entire support group.
My mission began the afternoon Dr. Miller told me I have a rare condition, Acromegaly. He told me it was caused by a tumour on my brain and could be fatal. As a single mother of two with a beautiful granddaughter, I felt scared and alone.
I did not want my children worried about the seriousness of my condition, so I decided not to tell them. I remember sitting and looking out a window with a blank stare, crying, thinking about everything and nothing at the same time. I felt alone and needed someone to talk to, someone who knew the depths of my despair.
I asked two endocrinologists whom I could speak with, but they told me because of patient confidentiality, they had no information to offer. With no support group available, my mission became clear: to create a safe haven for those diagnosed with Acromegaly. I wanted to offer my shoulder to cry on, and to help those going through the same life changing experience I went through. Furthermore, I wanted the world to know more about Acromegaly so they can see we are not “freaks”, but human beings with a condition not yet understood by science.
I was introduced to Crystal Gagnon, the research nurse to my endocrinologist, Dr. M. Johnson and we instantly hit it off. She wanted to help me start a support group! Together, we hit the ground running. Crystal started talking to reps from different drug companies and I started on our official letter to invite people with Acromegaly to the support group. Crystal handed the letter out to patients and I spoke with my own nurse, who also helped spread the word. Even endocrinologists who heard about our support group were willing to pass on the information!
The “Vancouver Acromegaly Support Group” has officially begun and to my amazement, we have quite a few people who have joined and I know there are more to come! Together, we are looking for the same things and we no longer have to feel alone. Instead of speaking with only a doctor, I can sit at a table and talk to a group of similar people about our condition. It’s fantastic. It’s heart warming.
So, as we continue this story, we are coming out of the woodwork and telling the world about Acromegaly. We are looking for support from our government to aid research endocrinologist, Dr. Ur, and other specialists so we can find answers to our questions and a cure for our condition.← View All Guest Editorials
Check out the true-2-me guest editorial on treatment Considerations for Acromegaly