Posted on July 30th, 2012 by Admin
Editor's Note: Robert K. is a patient/caregiver who submitted the following essay as part of the Mayo Clinic Center for Social Media Patient, Caregiver Scholarship Contest. To vote, simply use the Facebook "Like" or Twitter "Tweet" buttons at the bottom of each post to share or leave a positive comment. The top vote-getters will be finalists.
My name is Robert. The doctors think my tumor - deep inside my brain on the pituitary gland - was growing for at least a decade before I was finally diagnosed with acromegaly – also known as gigantism. I got the news when I was 51 years old, in 1988, but by that time I’d been suffering for many years. The physical symptoms were bad – terrible back pain, an oversized forehead like Lurch from the Addams family (the actor who plays him in the movie has acromegaly too), plus dental pain, not to mention huge hands and feet. To this day, you can drop a quarter through my wedding ring. (!!!)
But the emotional toll was much worse. The pituitary controls your hormones, and mine went haywire. I battled depression and sudden rages, and put my family and co-workers through hell. I’ll never forget how my daughter, then only six years old, pleaded with me to get help: “Please Daddy, don’t die!”
Finally a neurosurgeon went in through my nose and removed the tumor. But that was just the beginning. I still needed hormone replacement and, most of all, I needed to connect with other pituitary patients.
I tried to find out as much as possible about pituitary disease. But the Internet was still in its infancy, and no patient organizations existed back then. It became my mission to create one, so patients could connect with each other and find the right pituitary experts early-on, so they wouldn't have to suffer undiagnosed for many years like I did.
So I gave up my 25-year career in real estate and launched the non-profit Pituitary Network Association in 1990. Now, every year, the PNA helps thousands of patients get their lives back as they go through diagnosis and treatment. The PNA publishes a monthly e-magazine called Highlights and offer webinars with pituitary experts. I organize conferences and have helped publish several books, including the Pituitary Patient Resource Guide. A textbook for physicians and a book on the emotional toll of pituitary disease are now being readied for publication. The Pituitary Network Association is listed as a valued resource by the National Institutes of Health. I have appeared in dozens of news stories, including segments on the Today Show and Inside Edition.
But there is one area where the PNA badly needs to expand: social media. The PNA has a Facebook page, but that avenue of social media has so much room to grow - and I am not trained on how to maximize its potential. I know that Facebook is a valuable resource that allows pituitary patients to connect, as I often receive messages from patients who want to reach out to other patients. The PNA hosts a message board on our website, http://www.pituitary.org, but has struggled to get more people to use it. The Mayo Clinic’s conference on Social Media would give me the tools to reach millions more patients around the world. And my experience as a patient advocate would benefit other people attending the conference.
Pituitary disease is not rare: it is simply rarely diagnosed. Research now proves that 1 in 5 people will have a pituitary tumor in their lifetime. However the symptoms often masquerade as other ailments. I hope to learn to use social media more effectively to increase awareness of pituitary disease and help people get diagnosed sooner.
The PNA is not funded by the government – it exists solely through private donations. So I cannot afford to attend valuable conferences like the Social Media Summit, unless I am granted a scholarship. I hope you will “like” my essay in this contest, so that the PNA may improve its social media outreach and help the millions of undiagnosed pituitary patients who are still “wandering in the desert,” desperately looking for help.
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