A note on the importance of awareness

Tell us what is like to live with acromegaly

From J D Faccinetti – co-founder and chief editor:  In the awareness business, coming up with new, fresh, creative ideas is essential to get your message across, particularly when breaking through the clutter can be so challenging, expensive, and yes, very often, frustrating. It’s important to realize that the way to awareness and shorter diagnosis times is inherently tricky, especially when you recognize that we have to reach people that don’t know anything about acromegaly and likely have no interest in learning. Add to the challenge of media clutter, choices, and plain old skepticism, and it is probably safe to say this is an uphill battle.

For us, at PWN, there are 365 acromegaly days in the year. And every day, we want to scream as loud as we can: I WANT YOU …NO, I NEED YOU TO PAY ATTENTION, BECAUSE EVEN THOUGH PEOPLE SAY IT IS RARE, THIS CAN HAPPEN TO ANYONE.

This is not as rare as you think. If you don’t believe me click on the acromegaly button on the PWN website and see what I’m talking about. Visit our resources page or read this article about acromegaly day, and learn about all the great organizations working to make life better for people with this insidious disease. Learn how we can shorten the time to diagnose and improve quality of life. Get involved! 

And if you have acromegaly,  here’s an opportunity to tell us about  your experience with it  

Tell us what is like to live with acromegaly

A few weeks ago, Dr. Blevins asked me to provide insights for a ground-breaking book on everything about Acromegaly. My part of the book is on the patient’s perspective. What is it like to be an acromegaly patient, from day-to-day activities to specific pre and post-diagnosis experiences? How does it affect your life, your goals, your hobbies, your perspectives, everything? How about the drugs you take, side effects, symptoms, effectiveness, etc.   

We have the rare opportunity as patients to communicate anything you think is appropriate. Your insight will reach physicians, health care professionals of all kinds, industry, government, public policy, families, and importantly, people that most likely would have never heard about Acromegaly. 

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