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Light of Day

Battling a rare disease helps one man seize the day

By Jason Santerre

Santino Matrundola, a professional photographer, had to lose his sight before being diagnosed with acromegaly. Don’t worry. He’d never heard of acromegaly either.

Five years ago, at the age of 34, Mr. Matrundola experienced a variety of seemingly unrelated symptoms, from weight gain and hair loss to severe pain and mood swings. And then one day, while photographing an event, he suddenly went blind in one eye and had blurred vision in the other.

He finished his assignment, relying on both his skill and the familiarity of his camera equipment to get him through. That night, he told his parents there was something very wrong. He didn’t have to say anything. His parents could see it for themselves. Mr. Matrundola’s face was bloated, his feet swollen beyond recognition, and his lips looked like they were about to burst.

He made it to the emergency ward. Doctors ran a battery of tests and, before Mr. Matrundola could absorb it all, he was having brain surgery. “I’d been experiencing all of those symptoms plus severe migraines for six months leading up to that moment. I just thought it was stress. I mean, who thinks brain tumour?”

According to the National Organization for Rare Disorders (NORD), acromegaly (ac-ro-MEG-a-lee) is caused by the growth of a benign tumor affecting the pituitary gland. Acromegaly can occur at any age after puberty. When excessive secretion of growth hormone occurs before puberty, the disorder is known as gigantism, not acromegaly.

When he woke up from surgery, Mr. Matrundola says he regained some vision. The relief and joy of seeing again sparked an epiphany. “I felt like I had been sleeping for 34 years. When I woke up from that first surgery, I felt like I’d also woken up on an emotional level.”

Even after another surgery to remove the regrowth of the same tumour, Mr. Matrundola feels like life is better now. “I’m a happier person. Acromegaly has helped me appreciate life. I strive to not only be a better person, but a better photographer.” Indeed, Mr. Matrundola, says that being visually impaired has forced him to work harder. “I had no choice. I had to be more observant, and my art benefits from that.”

Today, Mr. Matrundola says his main ambitions are to keep making art and to spread awareness. After all, diagnosing acromegaly is difficult due to the slow development of symptoms over many years. That’s why Mr. Matrundola urges potential patients to be vigilant and medical professionals to be more aware of the disease itself.

He hopes his art and his story will help, if even a little bit. “I’m just an ordinary person with extraordinary circumstances, and I want to use those circumstances to do some good,” he says. “Ironically, acromegaly is what gave me a purpose — not only to shed light on a rare and invisible disease, but hopefully to help others see that our obstacles are just opportunities in disguise.”

 

Spring 2019, Vol 11 N°2

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