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!
President, Acromegaly Ottawa