From the desk of Jorge D Faccinetti, co-founder: I can’t help but think that raising awareness for acromegaly would be easier with a different name. My branding instincts tell me that this name is doing more harm than good—it feels dispiriting, depressing, and disagreeable, and it sounds just as bad. Leave it to a 19th-century French scientist to come up with it: “Acro” (extremity) and “megaly” (enlargement). Say “Acromegaly” a few times, and you’ll understand what I mean—it has a guttural, unpleasant sound that feels strange, dark, and negative. I’ve never liked the name, and every time I say it, I wish there were a better one.
Without a doubt, the word amplifies the stigma surrounding the disease. It often takes an appearance as extreme as Andre the Giant’s before anyone notices something is amiss, despite the signs and symptoms being visible for years—sometimes even decades—before a diagnosis is made. Talk to patients about their diagnosis journey, and you’ll hear horror stories. To make matters worse, movies have reinforced this stigma by casting actors with severe forms of the disease as evil, monstrous characters. In addition, community stakeholders like patients, advocates, and even pharmaceutical companies sharing thoughts and information on social media platforms have taken the unfortunate step of prefacing everything with “ACRO”—acro-feelings, acro-world, acro-tales, acro-rage, acro-warriors, acro-this, acro-that. Very well intentioned but probably not very helpful.
Rough sounding words like ‘Acromegaly’ often trigger an immediate, negative reaction. People instinctively tune out when they hear displeasing terms—they register the sound but don’t retain the meaning. When you mention ‘Acromegaly,’ unless the listener has a personal connection to it, their non-verbal response screams, ‘No thanks!’ The stigma is real, and, as I said, in my opinion, the word ACROMEGALY doesn’t help. However, as with all stigmatized things, perceptions are often far from reality. Acromegaly is a far more complicated disease than just enlargement of the highest point or extremity.
It is safe to say that I’ve been thinking about this subject for a while now. Actually, since the day of my diagnosis, roughly 14 years ago when my orthopedic surgeon uttered the word. Acro what? Sounds awful, was my first thought. I often wonder what people think when they hear or see the word ACROMEGALY for the first time.
The power of words.
Would a different name make our jobs easier? I think so. Words can create great images. Great writers and communicators can paint pictures with their words. Read the works of Hemmingway, Woolf, Lewis, Cervantes, Borges, Salinger, Dickens, Austen, Garcia Marquez, and you’ll know what I mean. Here’s one superb passage from Charles Dickens Bleak House:
“Fog everywhere. Fog up the river, where it flows among green aits and meadows; fog down the river, where it rolls defiled among the tiers of shipping and the waterside pollutions of a great (and dirty) city. Fog on the Essex marshes, fog on the Kentish heights. Fog creeping into the cabooses of collier-brigs; fog lying out on the yards, and hovering in the rigging of great ships; fog drooping on the gunwales of barges and small boats. Fog in the eyes and throats of ancient Greenwich pensioners, wheezing by the firesides of their wards; fog in the stem and bowl of the afternoon pipe of the wrathful skipper, down in his close cabin; fog cruelly pinching the toes and fingers of his shivering little’ prentice boy on deck. Chance people on the bridges peeping over the parapets into a nether sky of fog, with fog all round them, as if they were up in a balloon, and hanging in the misty clouds.”
That description paints a masterpiece. You can see the color and tone, feel the cold, and imagine the smells. It is just words, carefully chosen like paint brushes.
A word about imagery and brands
Imagery is largely shaped by words. In business and communication, as in prose, image is crucial. We describe, sell, and build relationships with brands through carefully chosen words, sounds, and visuals. Unfortunately, for Acromegaly, the narrative and imagery have fueled perceptions of gigantic wrestlers, deformed circus characters, and Bond villains—far removed from the reality most people with the disease experience. Most people with controlled or early-stage Acromegaly look just like everyone else. The pronounced physical characteristics often highlighted in medical literature typically emerge only after the disease has taken a strong hold. If we focus solely on these physical signs, we’ll never achieve timely diagnosis or meaningful change.
To raise awareness effectively, the public needs to relate, engage, and be curious enough to ask the right questions. Acromegaly needs a rebrand—a new name that better reflects the reality of the disease. A brand shapes how people perceive products, services, organizations, and even diseases. If we could present a more accurate picture, people might understand that anyone can develop Acromegaly, prompting greater attention and concern.
Brands are built on relationships formed through perceptions shaped by communication and experience. They provide clarity, emotional connections, and a sense of what to expect—especially crucial when dealing with the unknown. Unlike products, which have a physical presence, a brand exists in the minds of those who interact with it. So it begs the question, can we apply brand concepts to reshape how people perceive diseases like Acromegaly? By carefully managing the narrative, we can change how we talk about it, influence public perception, and encourage greater engagement. It may be time for a new name, a new narrative, and a new brand—one that truly resonates with the public and healthcare community, improving the emotional state, quality of life, and importantly early diagnosis for those with Acromegaly and other pituitary diseases.
The term “Acromegaly” was introduced by Dr. Pierre Marie, a French physician, in 1885. But it’s 2024—maybe it’s time for a name update that really captures the spirit of living with and studying the disease. How about, “I’ve got PM disease, named after Pierre Marie, previously known as acromegaly”? Or if we want to go a bit wackier, how about, “I’ve got EASIK disease (Every Acromegaly Specialist I Know), formerly known as acromegaly”? Of course, PM disease is already taken by Polymyositis, and my second suggestion—meant to tickle your funny bone—probably won’t make it past the brainstorming session. But hey, naming things is tough! It’s more than just tossing ideas around. You’ve got to do some serious research, consider how the name will resonate across different languages, test it and refine it until it’s just right.
Jokes aside, a new name might actually help bring more attention to a disease that often flies under the radar. If a catchy name can make healthcare professionals and the general public take a second look, maybe we could get to earlier diagnoses and better outcomes.
So, what do you think? We’d love to hear your ideas! Participate in our poll and share your thoughts!
Stay tuned for a follow-up article that dives into the nuances of naming. Coming soon!
Must see links and more information.
About brand names: https://www.businessinsider.com/what-brand-names-mean-2017-4
Patient story links: https://pituitaryworldnews.org/acromegaly-direct-and-personal/
https://pituitaryworldnews.org/a-story-about-a-nurse-with-acromegaly/
https://pituitaryworldnews.org/onward/
https://pituitaryworldnews.org/a-personal-story/
https://pituitaryworldnews.org/real-life-stories-told-by-people-living-with-acromegaly/
Acromegaly Community Faces of Hope: https://acromegalycommunity.org/faces
Acromegaly Canada ‘Light of Day” project: https://pituitaryworldnews.org/telling-a-story-with-art-and-photography/
Spanish acromegaly society photos: https://pituitaryworldnews.org/acromegaly-portraits-a-photo-essay-by-spains-acromegaly-community/
Other related articles: https://pituitaryworldnews.org/stigma-a-mental-or-physical-mark-that-is-characteristic-of-a-defect-or-disease/ –
https://pituitaryworldnews.org/november-1-acromegaly-day-anyone-can-get-acromegaly/
This is a fascinating link about basic emotions and the way animators interpret, and study faces to communicate emotion. Not totally relatable but fascinating and thought-provoking nevertheless: https://www.animationmentor.com/blog/the-6-basic-emotions-animating-disgust-with-jay-davis/#:~:text=The%20face%20of%20disgust%20is,lids%20and%20a%20furrowed%20brow.
Available now!
Published by Pituitary World News, The book unravels some of the difficulties that people encounter with this condition. Learn about diagnosis, treatment, and the artful practice of medicine as you read the experienced and evidence-based opinions, thoughts, and decision-making approaches of an expert in the field, Dr. Lewis Blevins. Cushing’s is brought to life by descriptions of real-life encounters reflecting the incredible journeys of patients cared for by Blevins. The threads that run through the book include the art of individualized medical decision-making, the wisdom of mentors, and the careful use of interpretation of imperfect laboratory tests. Buy now and start your journey to better understand and manage Cushing’s.
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- Available at major bookstores and online retailers. Click here to buy.
We also recommend this book on Acromegaly by Dr. Lewis Blevins and Dr. Manish Aghi with compelling Acromegaly cases from leading physicians worldwide and a patient perspective written by JD Faccinetti. See our article about the book here. The patient chapter is available free. Please reach out and we’ll send you a copy. You can order the acromegaly book here.
Photo of Heather an acromegaly patient leader in Canada by Santino Matrundola also an acromegaly patient. See Santinos works here.
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