What is hyperparathyroidism? How are we getting the word out? Hyperparathyroidism is a disease that is dramatically under-diagnosed. We now have so many technological outlets to help spread the word about hyperparathyroidism that it is getting harder to escape the knowledge that high calcium is bad.

I recently gave an interview to a radio station in Austin, Texas (1370 AM Talk Radio). It was the occasion of this interview that prompted me to reflect on where we are in the process of educating the public about hyperparathyroidism. What is hyperparathyroidism? If someone asks this question nowadays, we are “flooding the zone,” so to speak, by using every tool in our arsenal to help overcome the lack of knowledge regarding this benign-but-deadly disease.

What is hyperparathyroidism? Take a look at the web!

In 1996 my partner Jim (Dr. Norman) founded the website parathyroid.com. The idea was to raise public awareness of hyperparathyroidism and to change the landscape of how the disease was addressed from a surgical perspective. As we push toward 20 years of parathyroid.com the website has grown to over 800 pages of printed text. There are over 100,000 unique users per week who visit parathyroid.com. These users download 1 million pages every 12 days.

What is hyperparathyroidism? Take a look at social media.

The Parathyroid Disease Awareness Group on Facebook reaches over 1500 people per day. Patients eager to spread the word about parathyroid disease and high calcium reach one another in this revolutionary medium that has changed the rules of every game.

What is hyperparathyroidism? Take a look at mobile devices.

The CalciumPro app is available in the iTunes App store and the Android store and is the first medical app of its kind, allowing users to input their own medical information, arrive at likely diagnoses, view videos, find other patients, and assess their risks of developing complications of primary hyperparathyroidism–all for $5.99! This app runs on iPhones and Androids, but hits on all cylinders when seen on the iPad.

What is hyperparathyroidism? Look at the videos.

We started a parathyroid channel on YouTube (Parathyroid TV ) about 6 years ago and we’ve had over 1,200,000 views of our 32 videos that teach numerous parathyroid topics. These videos allow patients to watch an operation, learn about parathyroid anatomy, and even take a tour of the Norman Parathyroid Center at Tampa General Hospital. Virtually every aspect of hyperparathyroidism is covered on one of our videos.

What is hyperparathyroidism? Look on TV.

Dr. Norman appears in routine interviews on the Continental Tire and Grand-AM Road Racing Series that appear on ESPN and feature the parathyroid.com and CalciumPro App Porsche racecar. His interviews often elaborate upon the importance of recognizing high calcium and diagnosing hyperparathyroidism, as this disease is a curable one.

What is hyperparathyroidism? Listen to the radio!

I enjoyed thoroughly my 30-minute interview with Dr. Lindsay Berkson, a family practice doctor and internationally recognized author in Austin, who shares a passion for the public’s awareness of high calcium and hyperparathyroidism.

What is hyperparathyroidism? Take a look at the blog!

Well, by reading this you already know about the blog, but we’re all about being complete here! Several months ago we began the Hyperparathyroidism Blog. On a weekly basis we share interesting cases and and insights about our travels along the public’s learning curve. The blog is a patient and family favorite as the conversational style assumes the tone of a fireside chat with an expert.

What is hyperparathyroidism? Take a listen to your neighbor!

Any marketing executive will tell you that word-of-mouth is perhaps the single most powerful vehicle upon which advertising can travel. Our patients seem to find one another and at least two patients per week are referred to our center from previous patients. The choir director at Aunt June’s church and other such references are priceless and invaluable.

What is hyperparathyroidism? Check your email!

Educating the public and our colleagues about hyperparathyroidism is a full-time job, but we love it! The old way of teaching one patient at a time is helpful, but the 21st century allows us to get much more mileage from our educational investment. The resources we use can reach patients, doctors, families, etc., by the millions. Thus we have taken our efforts global…check out this email we received. It’s from a patient’s husband (whom we never met), but who used the information we provided to “take the wheel” on his wife’s behalf:

From: XXXXXXXXXXXXXXX@ireland
Sent: Thursday, October 31, 2013 4:47 AM
To: jnorman@parathyroid.com
Subject: Parathyroid Website

Dear Dr Norman & team,

I want to thank you for providing such an easy to understand and informative website. My wife was diagnosed with Hyperparathryoidism in Ireland, and, thanks to your website, I managed to successfully argue with the surgeon that after a negative Sestamibi scan, waiting for a positive Sestamibi/CT scan was not a valid reason to delay surgery. So rather than waiting 9 months for another scan, we had the surgery in 3 months. Thanks also to your website, I asked the surgeon to check the glands on both sides of her neck. She had 2 enlarged parathyroids removed, one from the left and one from the right. I’m going to collect her from hospital this morning and, thanks to you, we won’t need a return visit.

In Ireland hyperparathyroidism is still relatively new in terms of treatment and understanding, and doctors want to wait and see what happens (- it always gets worse – its a tumor, to paraphrase), but your website gave me the information and the confidence to argue the case. It also gave a good understanding of what was at stake if it wasn’t treated, so that gave me the strength to stand up to the medical establishment and demand something be done.

I want to thank you all from the bottom of my heart. Keep up the good work,

Regards, Duncan

Editor’s note: Getting scans is ALWAYS the wrong thing to do. Scans are not accurate enough to be used to diagnose hyperparathyroidism and they simply cannot be used to reliably determine who can and who cannot have parathyroid surgery. This is THE number one lesson we have to teach. STOP getting parathyroid scans!

What is Hyperparathyroidism? It’s getting to where only those who don’t want to know will have an excuse not to know. If people don’t know about the serious problems that arise from high blood calcium, then hyperparathyroidism may as well be a disease confined to a deserted island. We happily carry the torch across the world to make as many people/doctors as possible aware of this dangerous but curable disease. You can do your part, too! There are lots of ways–take your pick!

The post What is hyperparathyroidism? Look at how the word is spreading! appeared first on Hyperparathyroidism Blog.