I Had To Meet Others With My Rare Disease To Learn How To Lead A Normal Life

I support group I started has helped many accept their condition and move forward.
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As a mother of two precious daughters, I've always wanted to instill a sense of morals and beliefs into them, in hopes that they learn how to be genuinely caring individuals, and successful in their lives.

It was around 1994 when I hit a point in my life where I felt sick all the time. My own positive outlook and motivation to be a role model for my daughters was challenged. My motto, "take a negative and turn it into a positive," seemed difficult to accomplish.

In 2008 I suffered a heart attack. However, the cardiologist on duty at the hospital was unable to hear a certain sound that the heart makes during a heart attack.

A bit puzzled, he asked me some questions, like: "Had I gained any weight, how much, and in what time period?" I was floored, because I actually had gained 112 pounds in a year and a half. He also asked if my hands and feet had grown, to which I had to answer, yes, they had.

Two weeks later, I was diagnosed with acromegaly. At that time, I didn't know that this word existed, let alone know what this rare disease was and how it would affect my life for years to come.

What is acromegaly? It is a syndrome that is brought on by the pituitary gland producing excess growth hormone after puberty. In most cases, it is the result of a benign tumour developing within, or attached to, the pituitary gland. This gland is in the frontal lobe of the brain and, although it's only the size of a pea, it plays as much of a significant role in keeping one alive and well as the heart does. The pituitary gland's job is to regulate and keep the hormone levels in normal range. When this gland is not able to manage these levels, it has an effect on the organs, bones, soft tissue, and muscles.

Although I devoted to learning as much as I could about what I had, I still felt that something was missing. I understood the medical side of this disease, but I felt that I did not know how to lead a normal life with it.

The changes caused by this growth hormone may take years to become visibly obvious, and eventually change the appearance of bone structure and affect the rest of the body.

The symptoms that affected me included lack of energy, excessive sweating, enlarged head size, hands and feet, gaps between my teeth, vision problems, and constant headaches that would turn into daily migraines. Surprisingly, these are just some of the indications of acromegaly.

During these challenging times, I kept thinking about what I always told my girls: to take a negative and turn it into a positive. As difficult as it was, I knew this is what I needed to do — if not for me, then for them.

After undergoing endoscopic transsphenoidal surgery to remove the tumour within my pituitary gland, I began a mission to learn and understand as much of this rare disease as I could. Nearly a decade ago in 2008, little information was available on acromegaly. Although I devoted to learning as much as I could about what I had, I still felt that something was missing. I understood the medical side of this disease, but I felt that I did not know how to lead a normal life with it. I wanted to live a normal life and take better care of myself. To do so, I knew I had to meet with others that had acromegaly.

In Canada, there are strict rules for doctors and specialists regarding patient confidentiality. This created a huge barrier in the search for others like me. Rather than letting this barrier stop me, I took my negative situation and turned it into a positive. I decided to start a support group in Vancouver, B.C., designed to support patients with acromegaly across Western Canada.

The support group aims to bring specialists of all degrees and backgrounds together, to discuss their knowledge about treating acromegaly patients. Similar to how I wanted to learn more about this disease, I wanted to share this knowledge with others, so that they could learn how to take better care of themselves, as I firmly believe that knowledge is power for a better quality of life.

The best part about this group is that it brings people together around a disease they all suffer from. Acromegaly can cause feelings of loneliness and isolation. But with the group, many of us have somewhere to go and connect with others who feel the same. The group has helped many accept their condition and move forward, enabling them to lead a happier life, despite having acromegaly. We hold two meetings per year, one in the spring and another one in the fall.

Early last year, I met a gentleman with acromegaly over coffee and we were chatting about why I decided to start the support group. I realized that what I wanted to achieve was to raise the profile of acromegaly in Canada. That, in fact, I wanted to have Nov.1 officially recognized as Acromegaly Awareness Day. I knew this would help others with this condition know that they are not alone and that there is help and support out there for them. And this is what I did. The B.C. government recognized this day in 2016 and has been doing so ever since.

For as long as I live, I will keep moving forward with this mission so that no one with acromegaly feels alone.

Throughout my travels, meeting other people like me and speaking with specialists, I realized that this so called "rare" disease is not as rare as we are led to believe. The widespread belief is that there are only 1,500 to 2,000 patients with acromegaly in Canada. However, this number is a lot larger. There are hundreds and thousands more affected by acromegaly — they just haven't been diagnosed yet.

There are still huge strides to take to raise more awareness about acromegaly on a national level. In September this year, I hosted the very first National/International Acromegaly Conference in Canada. The conference was a huge success! We had specialists, patients, and pharmaceutical representatives all working together under one roof.

The ultimate goal is to bring more awareness and knowledge to the general public about acromegaly in hopes that those with this condition can be diagnosed as soon as possible and start educating themselves and receiving the support they need, but most importantly, not feel alone and lost.

This is how I turned my negative into a positive for myself and others with acromegaly. For as long as I live, I will keep moving forward with this mission so that no one with acromegaly feels alone, and so that other Canadians understand how they can support their loved ones when diagnosed with acromegaly. If not for myself, then for my daughters.