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

 

A walk in my shoes: A Caregiver’s Ongoing Journey

The following is a very brief overview of my wife’s journey as a caregiver.

Me, a caregiver!

Since December 2009, my life has been like trying to walk a tightrope in stilettos with one broken heel, holding my head up high with as much confidence as I can manage.

I am a caregiver, a mother of five children, a wife, a friend, a volunteer, and full-time worker who supports my family. I am also the sole income earner. On most days, I am physically and emotionally drained—and although difficult, I try to find the courage not to give up.

The life-changing diagnosis of acromegaly has been taxing on my relationship with my husband and our family. My role to my husband as a wife, friend, and partner have been blurred with my role as his caregiver.

Our journey begins

Although Dan was diagnosed with acromegaly in December 2009, our journey began after the birth of our daughter in September 1995. At that time, Dan was awkward: he had gained a lot of weight, which we attributed to stress. In February 1996, Dan lost the weight he had gained but did not look well. It took some convincing, but he finally agreed to see our family doctor. She confirmed his suspicion—his fear—that he had what we thought was age-onset Type 2 diabetes.

Being an Olympic athlete and knowing the best way to fight this disease, Dan took on the task of getting fitter. He cycled every morning. He ate a diabetic diet. We, as a family, took on a healthier lifestyle. He did everything one should do to keep this condition at bay.

Over the next few years, his diabetes became more acute, controlled through diet, then also through light medication, including Metformin. There were signs that things were a bit different, but we attributed the changes to diabetes. He had mood swings, anxiety, excruciating joint pain, sleep apnea, and hypertension.

In July 2004, Dan was not feeling well. He had flu-like symptoms and just could not keep anything down. I went to work as usual, but returned home at lunch to check on him. Despite our best efforts to replenish his electrolytes, he could not keep anything down, so we took him to the hospital.

Continue reading “A walk in my shoes: A Caregiver’s Ongoing Journey”

Patient Stories – share yours with the community!

We’re currently collecting answers to questions that paint a picture of a journey with acromegaly. It’s our hope that these patient stories will help bring awareness to the struggles of this rare disease and the long road to diagnosis. The stories may also help bring patients together and provide a sense of comfort in the fact that we are not alone. Sharing these stories may also help undiagnosed patients recognize their symptoms and get diagnosed faster.

If you’d like to share your story, please email your answers to the following questions (as many or as few answers as you’d like) to acromegalyottawa@gmail.com.

We will compile your answers into a narrative and send it to you for final approval before it is posted. It is your choice to identify yourself, or tell your story anonymously.

Continue reading “Patient Stories – share yours with the community!”