Listening to the voice of the patient

From J D Faccinetti, cofounder – From time to time we highlight notes and comments we get from our readers. We strive to make sure the voice of the patient is heard through our articles and podcasts so the needs, wants, perceptions, and expectations of patients and families are understood and taken into consideration.

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Our recent commentary citing an article on Rogue Doctors by David C. Rettew, MD, on the preponderance of misinformation prompted a good deal of attention from readers and social media alike. This misinformation, as the article points out, is often disseminated by all types of people and unfortunately various types of healthcare professionals, usually to promote miracle cures for everything from autism to obesity.   The problem is that these claims are at best backed by dubious science and at worse false, creating real challenges for the people and institutions that are trying to get the right information out.  The authors make a compelling case for truth and scientifically based assertions that affect people’s lives.  One of our readers weighed in on the article and sent us a comment through one of our social media channels. We thought this was a very compelling reaction to the reality patients very often experience.   You can read the article here.

And this is the note from Sonia Pierce, a pituitary patient:

Sonia writes:

“I like this article! It is so true! There is so much miss information out there and no one is held responsible. With that being said, if there was not a market for it, it would not exist. Some people feel so horrible they are desperate for anything that is going to make them feel human again. Not everyone has access to great doctors. I have talked to people who have been told by their doctors to eat less and exercise more as a treatment for Cushing s. Believe it or not, there are Doctors that order [TSH] labs, when the patient has no pituitary gland, to evaluate their thyroid function. I have heard so many horror stories and lived through many ER horror stories myself. This is why so many resort to the internet searching for a miracle. And for every ounce of hope we have, there [are] a hundred internet sites confirming our beliefs that taking this magic potion is the latest and greatest potion out there and is going to fix us. We just want to feel normal again, it is very tempting to believe the scammers preying on people with illnesses who are promising miracle cures, or even just one good day of feeling human again.
I am grateful for the PWN, and grateful for you taking the time to educate everyone who is willing to listen and learn. You have become [an] educational outlet for those of us who are lost after losing the function of our pituitary gland and or living with tumors that have robbed us of the person we once were. Education is the only silver bullet. Thank you for all that you do!”
Thank you, Sonia

Thank you, Sonia! And thank you for letting us hear your voice!

Read more articles from our voices series  And stay tuned for more “Voices”! 

© 2019, Pituitary World News. All rights reserved.

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