Racing for Answers: Annie’s Journey to Raise Awareness for Acromegaly

Meet Annie – she’s passionate about the environment and is an accomplished marathon runner who has conquered the streets of New York City and is lacing up for the Chicago Marathon next. 

What you may not see is that behind the race medals, Annie lives with acromegaly. Today, in honor of Acromegaly Awareness Day, Annie is sharing the one thing she wants you to know about living with acromegaly: 

For years, I was misdiagnosed, largely because of how society, and even medical professionals, expect “sickness” to look. 

Acromegaly is a rare disease that changes your appearance slowly over time. You might think of Andre the Giant, or Maurice Tillet, the wrestler whose features inspired the character Shrek. But here’s the reality: only about three in a million people have acromegaly, and it takes an average of 10 years to be properly diagnosed. 

The symptoms creep in randomly and don’t always make sense together: headaches, joint pain, changes in facial structure, fatigue. It’s a puzzle that even experienced doctors struggle to piece together. I was “lucky” to get a diagnosis in five years, but even then, some doctors dismissed me with comments like, “You don’t look acromegalic.” 

From the outside, I look like I’m thriving. I run marathons. I live a full, active life. But what people don’t see is the pain, exhaustion, and fear that I carry on the inside.  

That’s why awareness matters. For patients, awareness means being believed sooner, not dismissed with lines like: 

“You’re just stressed.” 

“Maybe you should exercise less.” 

“But you look great!” 

And for practitioners, awareness means looking beyond appearances to recognize the subtle but powerful ways acromegaly shows up. 

This Acromegaly Awareness Day, I’m sharing my story to remind you: looking healthy doesn’t always mean being healthy. By spreading awareness, we can shorten the years of uncertainty and help people get answers — and care — faster. Everyone deserves an answer, even if the answer is rare. 

If you live with acromegaly, or know someone who does, and are looking for resources and a supportive community, follow and reach out to NORD Member organizations Acromegaly Community, Inc. and the Pituitary Network Association.