I met Santino Matrundola at the Canadian Acromegaly Conference I won a scholarship for in 2017.
At first, I wasn’t sure if Santino had Acromegaly. He didn’t display the usual symptoms: the large jaw, hands or forehead. He was quite reserved, sat amongst everyone but not saying much. Unlike me, perhaps he was a little shy. Perhaps he was just a friend of someone? I really wasn’t sure.
The next day, however, it became evident that Santino did indeed have Acromegaly – and was fiercely passionate about telling his story.
Before I presented my talk on Being Rare, Santino shared his experiences of diagnosis: the fears, the insecurities and the funny moments too. Unlike my talk, Santino felt more comfortable reading a script for his presentation. It was incredibly powerful: a finely tuned and precisely honed presentation that left people in tears.
After the conference we bumped into each other at the airport and vowed to keep in touch.
The Light of Day
Since then, Santino has been a very busy boy. He tirelessly works hard to raise awareness, producing fabulous little memes and infographics exploring what it means living with this condition.
And then in September this year, Santino organised a gallery exhibition showcasing his work: eleven photographs celebrating people who have overcome Acromegaly, celebrated through the medium of photography. I’d met most of the people in the exhibition at the Conference back in 2017, so it was amazing to see them in a new light.
The exhibition was a huge success and – as desired – helped to further raise awareness of our unique condition.
Well done Santino. Keep shining that light.
You can view the full gallery of images at Santino’s website.