Acromegaly

Jack's story

Jack sought help for his impaired vision. What he found was the answer to changes in his body he'd barely noticed creeping up on him, all caused by a tumor on his pituitary gland.

Patient organizations offer understanding

“I didn’t know enough to connect the dots until the specialist asked me things like: Have you gained weight? Have your hands gotten bigger? Is your body changing shape? And suddenly it all made sense”, Jack tells.

For several years, Jack’s body had been changing gradually. He had assumed weight gain was linked to lifestyle changes. “I had turned 30, stopped smoking, and thought it was just because I was eating more. But my hands, feet, wrists and ankles were getting larger. My forehead looked bigger. My teeth weren’t straight anymore. Everything was changing – but so slowly that I couldn’t keep up with it.”

Jack was diagnosed with acromegaly. “I had never heard about it. I was terrified – but also relieved. Finally, there was an explanation for what was happening to my body.”

The tumor had grown large enough to press on his optic nerves, causing the visual disturbances. Within a week, Jack underwent his first surgery, followed by six weeks of daily MRI-guided radiation. He also started medical treatment.

Living with acromegaly has meant coming to terms with lasting changes to his body. 

“Your body changes in ways you don’t expect. It’s not just medical – it affects how you see yourself. In a way, it’s a kind of body dysmorphia. Over time, I’ve gotten used to this secondary version of myself.”

Connect with others

For many years, Jack felt alone with his diagnosis. That changed when he connected with patient organizations. “Acromegaly is rare, and for a long time I felt like I was the only one going through this. People sympathize, but they don’t understand your process. Meeting others who’ve been through the same thing – that’s incredibly meaningful.”

Today, he is supported by a care team in Arkansas where he lives with his wife and three children. Recently, he marked his 50th birthday by walking the Camino de Santiago in northern Spain. “It’s been a long road, almost 18 years since my diagnosis but I feel like I’m in a good place right now.” And his advice to newly diagnosed patients is clear:

“Connect with others. You’re going to need people who understand, who can help you normalize what you’re going through – and guide you on what to do next.”