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Meet Annie \u2013 she\u2019s 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.\u00a0<\/strong><\/p>\n What you may not see is that behind the race medals, Annie lives with acromegaly<\/a>. Today, in honor of Acromegaly Awareness Day, Annie is sharing the one thing she wants you to know about living with acromegaly:\u00a0<\/strong><\/p>\n For years, I was misdiagnosed, largely because of how society, and even medical professionals, expect \u201csickness\u201d to look.<\/span>\u00a0<\/span><\/p>\n 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\u2019s the reality: only about three in a million people have acromegaly, and it takes an average of 10 years to be properly diagnosed.<\/span>\u00a0<\/span><\/p>\n The symptoms creep in randomly and don\u2019t always make sense together: headaches, joint pain, changes in facial structure, fatigue. It\u2019s a puzzle that even experienced doctors struggle to piece together. I was \u201clucky\u201d to get a diagnosis in five years, but even then, some doctors dismissed me with comments like, \u201cYou don\u2019t look acromegalic.\u201d<\/span>\u00a0<\/span><\/p>\n From the outside, I look like I\u2019m thriving. I run marathons. I live a full, active life. But what people don\u2019t see is the pain, exhaustion, and fear that I carry on the inside.\u00a0<\/span>\u00a0<\/span><\/p>\n That\u2019s why awareness matters. For patients, awareness means being believed sooner, not dismissed with lines like:<\/span>\u00a0<\/span><\/p>\n \u201cYou\u2019re just stressed.\u201d<\/span>\u00a0<\/span><\/p>\n \u201cMaybe you should exercise less.\u201d<\/span>\u00a0<\/span><\/p>\n \u201cBut you look great!\u201d<\/span>\u00a0<\/span><\/p>\n And for practitioners, awareness means looking beyond appearances to recognize the subtle but powerful ways acromegaly shows up.<\/span>\u00a0<\/span><\/p>\n This Acromegaly Awareness Day, I\u2019m sharing my story to remind you: looking healthy doesn\u2019t always mean being healthy. By spreading awareness, we can shorten the years of uncertainty and help people get answers \u2014 and care \u2014 faster. Everyone deserves an answer, even if the answer is rare.<\/span>\u00a0<\/span><\/p>\n 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.<\/a> and the Pituitary Network Association<\/a>.<\/strong><\/p>\n","protected":false},"excerpt":{"rendered":" Meet Annie \u2013 she\u2019s 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 … <\/p>\n![\"Annie](\"https:\/\/rarediseases.org\/wp-content\/uploads\/2025\/10\/IMG_2347-Annie-Chicago-1024x767.jpeg\")
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