Acromegaly
My giant story…
Once upon a time, I had a secret that I kept from the world. It was a part of me that I struggled to explain to others, as it was not a typical secret that could be easily understood or shared. I was changing, both physically and mentally, and I didn’t know why. Nobody else seemed to notice, or if they did, they didn’t say anything to me. It was as if I existed in a bizarre reality, where my body was not under my control. I searched for answers from different medical professionals, hoping to make sense of it all. Finally, many years later, I discovered the reason behind the changes. In this little story, I will tell you how I discovered that I was not just living in a strange fairy-tale, but that I am, in fact, somewhat like a character straight out of one.
Whenever I try to explain my condition to others, I find myself retelling the stories that I heard as a child. It’s the only way that I can convey the reality of my situation. “You know the stories about giants, like Jack and the Beanstalk or the Big Friendly Giant? Well, giants aren’t merely mythical beings. They’re real, and as it turns out, I’m kind of one of them.”
I have Acromegaly. A rare condition where my body produces too much growth hormone and causes my body tissue and bones to grow more quickly. This condition is typically associated with a tumour on the pituitary gland.
My journey with Acromegaly began long before I understood it, but it wasn’t until a pivotal moment – Friday 6th March 2020 – that everything came into focus. On that day, I was rushed into emergency brain surgery, due to pituitary apoplexy, a rare medical emergency caused by a pituitary tumour bleeding and rapidly enlarging. Until that moment, I had no idea that I had a pituitary tumour or Acromegaly.
Looking back, I couldn’t pinpoint the earliest sign of the tumour. Throughout my twenties, I experienced so many changes in my body, and I was led to believe it was a natural part of growing up. However, I do remember the moment I first noticed something strange was happening to my face. I was 22 years old, on a trip to Europe with my girlfriends, when I saw a selfie of me and my best friend. It was then that I realized how much my mouth had changed. What was once a normal over-bite had become an under-bite.
Shari Dawson – General Manager, APF
Undiagnosed Acromegaly (2018)
Over time, my jaw kept growing, and I started to experience other strange symptoms. My rings no longer fit, my shoe size went up 2-3 sizes. Every morning, I would dread the pain that would accompany the simple task of opening my swollen hands, even something as basic as holding a toothbrush had become a challenge. I was constantly fatigued, gaining weight that I couldn’t lose and plagued by stomach pains, but despite multiple scans, nothing ever showed up. However, one of the more debilitating symptoms was the migraines. They were excruciatingly painful, coming on almost every two weeks and lasted days at a time.
But it wasn’t just the physical symptoms that were taking their toll. I also battled anxiety. I’d have panic attacks while driving to work and often couldn’t get out of my car. At home, I’d spend 20 minutes in the shower crying every night. Despite having a good job, great friends, and a loving partner and family, I couldn’t escape the overwhelming feeling of sadness that weighed me down.
My first surgery removed majority of my tumour, but I was left with residual traces in my cavernous sinus. Unfortunately, this location is considered inoperable, so I commenced monthly injections to control my growth hormone (GH) levels. It wasn’t long before I realised that while these injections were successful in controlling my GH, they weren’t working for me. I was constantly sick, my hair was falling out and my heart rate was plummeting. I’d also lost function of my reproductive hormones, which meant I had to undergo other hormone therapy.
During these difficult times, I turned to the Australian Pituitary Foundation (APF) for some much-needed support. I was hoping to connect with others who “got” it – people who understood the complex mix of emotions, struggles, and challenges that come with a rare disease. Thanks to the APF, I was able to connect with other women who were going through similar experiences. I didn’t feel alone on this strange journey.
In 2021, I was lucky enough to undergo a second surgery to remove my residual tumour. The surgery was a success. I had no major complications and suddenly, I was able to live like I was “normal” again. I married the love of my life, and we started our IVF journey – despite numerous failed attempts, we remain optimistic.
However, in January of this year, routine blood work revealed elevated IGF-1 levels. My heart sank – not again. Now, my tumour is back, but thankfully it is “under control”. Once again, I find myself weighing my treatment options and coming to terms with the fact that my life will never be “normal.” It’s a tough pill to swallow, but I know that I’m not alone in this struggle.
Living with Acromegaly is a constant battle. It can be isolating, painful, and emotionally exhausting. But I take comfort in the fact that I am not alone. Like the giants in my childhood stories, I am a unique and powerful force in the world. Every day, I am learning to embrace my new normal and find peace in my journey. While it may not be the fairy-tale ending I’d hoped for, my story is one I feel I need to share. A story of perseverance, strength, courage, and hope.
ABC News Breakfast
So how can you help inspiring patients like Shari?
By making a tax deductable donation by June 30, you’ll be contributing to critical research of pituitary conditions, and supporting advocacy for better treatment options. You’ll also be helping us to raise much-needed awareness, disseminate important information and provide ongoing support to patients and their families.
With that in mind, we have set a target of $7,000, which will help us to continue to make a meaningful difference to the lives of those living with a pituitary condition.
So, this tax time, give the gift of light and hope.
Shari before acromegaly (2012)
Shari and her husband, undiagnosed acromegaly (2018)
Shari in the ambulance with her husband (2020)