Acromegaly – This November 1st will be the first ever National Acromegaly Awareness Day. But what is acromegaly? Usually, acromegaly develops from an excess growth hormone. In some, it’s signalled by an enlargement in the hands and feet. In others, it’s invisible—aside from the adverse and life-altering side effects including extreme fatigue, brain fog, joint pain, and vision problems. Santino Matrundola, owner and photographer of Fusion Photography, experienced the invisible later effects of the disease.
In March 2014, Santino visited the doctor with extreme daily migraines. He was sent away with antibiotics to treat a sinus infection. However, he knew it wasn’t a sinus infection when he momentarily lost vision in one eye while photographing an event a few weeks later. He went through emergency surgery to remove an invasive tumour in his pituitary gland. It was the culprit of his headaches and vision loss, pressing on nearby brain tissue. Santino was diagnosed with acromegaly.
As one of the constants throughout his struggle, his photography motivates him to find the positivity in his chaos. “Photography helps me on a daily basis,” he says. His photography business brings him even more joy than before. Now he uses photography to change the way others see themselves, as well as the way he sees himself.
Raising awareness about acromegaly
Living with this life-changing diagnosis, enduring two surgeries, and attending countless doctor appointments have inspired Santino’s mission to raise awareness for his invisible disease. “Anyone I speak to who doesn’t know me has no idea what it is,” he says. “I didn’t know either when my doctor first told me.”
Alongside public awareness, Santino hopes to spread positivity among others coping with similar situations. “I ended up dealing with it in a positive way,” he says. “I chose to find something in the chaos and make it positive to keep pushing through.” Santino started doing his 30-second dance parties at times when he feels the struggle the most—before surgeries and other stressful appointments. This coping mechanism offers an uplifting moment of control when his health lies in hands other than his own.
Santino’s support system
When faced with any challenge, a support system is key to coping, whether that support is from a community of others struggling with the same disease, or family. “I think having a supportive family has helped me stay positive. On my toughest days, it’s my family that keeps me going,” he says. For example, his father attended every single doctor appointment in the first year after Santino’s diagnoses. Professionally, his photography community is ready to lend a hand. Santino also found a community of others diagnosed with acromegaly, and recently shared his story at their 2017 Canadian Acromegaly Conference in Vancouver.
Santino turns to social media to encourage others struggling to find a similar support system. His 30-second dance parties caught on—he’s received feedback from others saying they dance it out now too. “It cheers them up. It’s not just about the disease itself, but coping mechanisms.”
Santino recognizes the silver lining of his disease in more than just his dance parties. “I’m not grateful that I have this disease, but I am grateful for what it has taught me. It’s brought me to another level of living,” he says. “I’ve met incredible people on my journey, and it’s helped me grow into the person that I am.” In the end, his experience with Acromegaly has turned into a positive experience. “I can’t believe that something so negative brought me to a place that’s so positive.”
On top of continuing to successfully run his photography business, Santino recently took on the responsibility of joining the official Acromegaly Ambassador Initiative. At the Acromegaly Conference in September, he and five others were asked to lead the awareness movement in Canada. Stay tuned as their awareness ideas come to life before next year’s National Acromegaly Awareness Day.
By: Jill Clark – mtltimes.ca