Survey: What is it like to live with Acromegaly?

Your insights matter.

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 these days when breaking through the clutter can be so challenging, expensive, and yes, very often, frustrating. 

An opportunity to tell our story.  

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. 

So here it is, this is the question: What is it like to live with Acromegaly?  

Click Here to access the survey platform

You can also send us your answer and thoughts through our social media channels or you can click here to access this private, secure survey link where you can respond anonymously.

About the book.

The book is authored by Lewis S. Blevins Jr., MD, Medical Director of California Center for Pituitary Disorders at UCSF, and Professor of Clinical Medicine and Clinical Neurological Surgery, and by Manish K. Aghi M.D. Ph.D., Attending Neurosurgeon, California Center for Pituitary Disorders, Associate Professor of Neurological Surgery Principal Investigator, UCSF Brain Tumor Research Center.

This will not be the usual textbook on Acromegaly. Chapters will be authored by leaders in the field who will not only provide a state-of-the-art review on selected topics but also provide their personal opinions based on experience in dealing with large numbers of patients who have Acromegaly. 

Acromegaly affects each person differently. 

Whenever I get the chance, I try to tell people about Acromegaly, and without boring them to tears, give them a summary of my story. I developed this “elevator pitch,” which assumes that you only have the time it takes to ride an elevator, usually 20 to 30 seconds, to tell your story. Whatever you say has to be memorable, relatable, and above all, brief.  

I must say that most people appear to be genuinely interested and want to hear more. And after they gasp when you tell them that, in most cases, it takes decades for someone to figure out what you have. Usually, the question that follows is: What does it feel like to live with Acromegaly? I’ve always thought it was a difficult question because each person’s experience is so different from that of others.

 Contact us on our social media channelsor click here to access this private, secure survey link where you can respond anonymously. 

You may write as much as you please! 

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