Musings about the pituitary, awareness and amplification

From JD Faccinetti, co-founder and chief editor – I like to ramble, so here it goes. I was musing about how unique and essential this little gland is—the size of a pea, the pituitary runs almost every system in your body. And if you are reading this, which means you found Pituitary World News, you know what happens when it goes sideways.

The science: 

It is safe to say that any imbalance or malfunction will send your body into mayhem. Dr. Blevins often says that pituitary function and disease textbooks are considerably larger and weigh much more than the gland itself. He often says it’s almost unfathomable that slight excesses in pituitary hormones, measured in picograms per milliliter, can result in such profound changes in human physiology, function, and physical appearance. The power of hormones is astonishing!

As someone with first-hand experience, I can’t help but agree. As you learn to deal with your condition, as I and many of you did, you dive into the science, the hormones, the tumor type, diagnostics, genetics, symptoms and signs, related disorders, research, new medications and therapies, new surgical techniques, and instruments, you name it. As I started to understand some of the science and met some of the most knowledgeable and talented people who made the pituitary their life-long careers, I told myself this needed to be discussed and amplified and foolishly wished someone would have exposed me to the science of hormones as a young person when I was deciding what to study.

This area of science is fascinating, and if people knew more about it, it would inevitably become more famous. For so many of us, the first time we hear about this little gland is when we are told there is something wrong with it. I must admit I knew about the pituitary, but the fact that you could have a tumor on it that would screw up your life was as far from my mind as you can get it.

The advocacy efforts:

If you are like me, after diagnosis, the obvious next step is to learn, decide, advocate for yourself, and join others who share your needs. In addition to PWN, there are many excellent advocacy groups: Acromegaly Community and Acromegaly Canada, CSRF for Cushing’s, the Pituitary Foundation in the UK, groups for hypopituitarism, pituitary tumors, AVP-D (diabetes insipidus), international organizations like WAPO that work with advocates to improve how to practice advocacy around the world, and many more. These groups provide excellent support. On the industry side, many pharmaceutical companies offer knowledge for your journey as you learn about the available medications. There is lots of support and good news here, but also lots of work. Generally, knowledge and understanding have advanced exponentially and are supported extensively by PWN and all these stakeholders. But there is still a lot we don’t know.

The noise-making:

During my time in the communications world, we discussed media “reach and frequency.” How many people do you reach with a specific message, and how often do they have to see it to remember it? And then, what do they do with that knowledge? Do they talk about it? Do they share it? Well, the noise-making job has gotten much more complicated since network television, radio, and wide-reach print media ruled. The advent of the Internet and social media, as well as the fragmentation of the available channels, makes it almost impossible to get people’s attention. Forget about trying to get them to read something longer than two sentences! If you don’t believe me, look at how people interact with platforms like Instagram, Tick-Tock, Facebook, and others.

And  here’s an unsettling fact: According to Pew Research, Americans Who Mainly Get Their News on Social Media (Those younger than 30 and, unfortunately, many much older than that) “Are Less Engaged, Less Knowledgeable.” This is concerning and makes it much more challenging to get information out. While it’s true that the Internet, in general, and social media, in particular, have provided new platforms to communicate and engage, they restrict reach using complex algorithms that focus on shallow messaging, lousy entertainment, suggestive and almost idiotic, sometimes bizarre spectacles. It’s baffling to fathom how and why they command such substantial audiences. Health communicators for the industry and other health-related entities like PWN and advocacy groups understandably and effectively talk to their constituents. Still, many often don’t think about how to get the message to the uninterested. Why would anyone be interested in the pituitary gland unless it affected them or those close to them? And what about those who are affected – or could help someone who is – but somehow are not getting our messages?

So, how do we make noise? What do we talk about? How do we decide what may interest people to read in an article, listen to in a podcast, or view in a video? These may offer a few answers: For starters, the people who work in pituitary medicine and science are interesting: doctors, scientists, advocates, and people with diseases, AKA patients (I’m not too fond of the word patients) are engaging. And their stories are fascinating. Think of our understanding of molecular biology and pituitary receptors and how that has spurred the development of new therapies. Think about what’s coming and already happening with artificial intelligence. Those stories need to be amplified.

Many of the endocrinologists, neuro-endocrinologists, and neurosurgeons I know are fantastic scientists and exceptional artists. They practice the art of medicine. The neurosurgeons perform magic every time they tackle one of these little monsters. Many scientists and industry professionals spend their lives learning about these highly complex issues, from discovery to drug development to how to solve access issues, so anyone who needs medication will get it. If you don’t believe me, listen to Drs. Scott Struthers and Stephen Betz talk about pituitary receptors and drug development.

These stories, well told, are attention-getting treasures.

We are proud to be part of those efforts, however insignificant. Join us in this work to amplify all this exciting stuff worthy of note. How and where to do this work better and more effectively is what keeps us up at night. Undoubtedly, more knowledge will lead to better chances that people – including healthcare professionals – will start recognizing these diseases, asking pertinent questions, and suspecting them earlier, hopefully leading to early diagnosis. And that, my friends, is the name of the game!

Click here to request a list of audiences that need to know about the pituitary gland from the PWN strategic communication plan:

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