I’ve been both blessed and stressed by an extraordinary childhood.
My name is Claire and I’m in Year 10. I’ve been both blessed and stressed by an extraordinary childhood. At seven years of age, I was 160cm and diagnosed with the rare pituitary condition – gigantism. Just like the Alton Giant who greets most tourists at Ripleys all around the world. When my mother tells me I’m special, it’s a fact — I am one in fifty million!
After six months of pharma-therapy at the Mater Kids in Brisbane, my amazing Endocrinologist helped us get into a research protocol (pituitary disorders) with the National Institutes of Health (NIH) in Washington DC. I was an inpatient at the world’s leading research facility for two months, where the people in white coats outnumbered the patients. Even at eight years of age, I knew there was amazing things going on around me, and world class patient care. During my stay at the NIH over the years, my time spent with other patients, who were still desperately finding answers, showed me how important “hope” was. The highs and lows of medical treatments gave me a first-hand look at the life changing impact of scientific research. I saw the amazing breakthroughs of medical research and all the teams and support workers that contribute to them and make the patient experience as smooth as possible.
The NIH cured me at the expense of losing my entire pituitary gland and I am now on full pituitary hormone replacement for life. I travel back to the NIH every two years, however my local (awesome) Endocrinologist is my primary carer, who we sees quarterly. I am forever grateful for his huge role in my life and his investment in my health and well-being. He is my inspiration for paying it forward in my future. I spend most of my free time training and playing competitive water polo. My extraordinary life ticked another box this year – with being named in the Water Polo Australia’s Cadet Women’s team (born 2006/07), which played in the FINA World Cup in Greece in August, after a two-week tour of Hungary.
Not quite as extreme as my brain surgery, but making the team was also an extremely challenging and difficult task, having only been invited to join the squad halfway through their six-month trial. Being a nationally identified player meant we had to complete the Sports Integrity Australia “Therapeutic Use Exemption” forms for the HRT I’m on — this was an interesting process! Five out of the seven HRT I take are prohibited both in and out of competition. So, I needed to prove that at no stage since I was eight years of age, did I have an unfair sporting advantage. It was a huge process, but very interesting reflecting back on my medical history.
My favourite school subjects are Sports Science, Food and Nutrition and Maths. The leadup to making the national team made Term 2 and 3 this year tricky to manage study wise, but thankfully I have awesome teachers and do enjoy school, so found a balance that worked for both!
To learn more about Claire’s condition, simply click on the ‘Gigantism’ button below.
So how can you help inspiring young patients like Claire?
By making a single or regular gift to APF, you’ll be contributing to critical research of pituitary conditions, and supporting advocacy for better treatment options, as well as helping us to raise much-needed awareness, disseminate important information and provide ongoing support to patients and their families.