From group leader Sharmyn McGraw: Hi All, I hope you can join us on Zoom this Saturday, Nov. 14, 2020 starting at 9:00 a.m. (PST). For those that can't make it, I will record the meeting and post it later on our Facebook page. I look forward to seeing you!
I have been struggling for years with blood and urine tests coming back just under the threshold for a definitive diagnosis of Cushings. And when I ask for a repeat test I get hit with questions like “what makes you think you have cushings?” when the original idea came from a rheumatologist. Very frustrating!
A new method of collecting and analyzing earwax for levels of the stress hormone cortisol may be a simple and cheap way to track the mental health of people with depression and anxiety. Cortisol is a crucial hormone that spikes when a person is stressed and declines when they're relaxed. In the short-term, the hormone is responsible for the "fight […]
I am thankful, believe it or not, that I had Cushing’s. Mind you, I wouldn’t want to have it now, although diagnoses and surgeries seem “easier” now. Having Cushing’s taught me a lot, including how to stick up for myself, how to read medical books to learn more about my disease, how to do web design, how to navigate NIH. It taught me patience, how to make ph […]
Today is the anniversary of MaryO's pituitary surgery at NIH in 1987. Today is the 33rd anniversary of my pituitary surgery at NIH. As one can imagine, it hasn’t been all happiness and light. Most of my journey has been documented here and on the message boards – and elsewhere around the web.
The researchers concluded that “hydrocortisone granules are an effective treatment for childhood adrenal insufficiency providing the ability to accurately prescribe pediatric appropriate doses.”
Cookie died October 11, 2003. She had a pituitary tumor, recurrence, BLA, PCOS, radiation... Cookie touched a lot of lives. I would get these perky, cheerful and witty emails. It is terrible to lose her. She has left such a legacy, though, that she will go on touching lives for many years to come. She loved people and wanted to make a difference in the lives […]
Hi I recently became aware of my possible buffalo hump after xrays of my neck were normal except for a fat pad at the base of my neck. After reading of some of the symptoms of Cushings it was a light bulb moment with so many symptoms being similar to what I’m going through.
i have been on high doses of prednisone for over a year and have all the symptoms of exogenous cushing syndrome but have been made to feel like i;m going mad. they have not diagnosed me as having this. i get so depressed with the pain sometimes and feel like they are only interested in the original condition not the side effects.
Happy Girl writes: I am not so great at typing since my mind gets so jumbled but I have been at this journey for 2 years. I did make a detailed youtube video to tell my story so far
This Survey is to gather information for the Adrenal Insufficiency Awareness Organization’s grant project to create educational materials for ER personnel.
The survey is for those of you who have been to the ER during an impending or full blown Adrenal Crisis. (you may fill it out for a child or yourself)
Your help is appreciated!
At the end of the survey you will have the chance to enter for a chance to win an Adrenal Insufficiency Awareness Pin.
FindER Connects Users to the Most Complete Database of ERs in the U.S.
BOSTON—Researchers at Massachusetts General Hospital’s (MGH) Emergency Medicine Network (EMNet) announced today the launch of EMNet findER™, a free iPhone application designed to help users locate the closest emergency room to their current location, as well as provide directions and additional information with a touch of the screen. FindER uses the iPhone’s global positioning system to quickly direct patients to emergency rooms anywhere within the United States.
“FindER is designed to provide key information to people experiencing health emergencies,” says Carlos A. Camargo MD, of MGH’s Department of Emergency Medicine and EMNet director. “FindER uses information from EMNet’s own database of emergency departments, which is the most complete and accurate in the nation.”
Along with directions and general information, findER is designed for quick phone calls to both the care-center itself and in cases where necessary, 911 emergency services.
“EMNet researchers maintain a database of nearly 5,000 emergency rooms in the United States. Unlike a simple Google search where the results may include many emergency centers that have closed or moved, or even veterinary hospitals, findER’s results are based on an aggregation of emergency room listings from multiple sources that have been confirmed by researchers at EMNet,” says Camargo. “FindER is designed to help patients get to emergency rooms in the shortest amount of time.”
FindER is ideal for travelers, especially those suffering chronic medical conditions, or those traveling with friends or relatives with health problems. FindERis available now as a free download in the iTunes app store. Simply click this link or search “EMNet findER,” to download. For a short demonstration video, users can visit YouTube.
MaryONote: Just as info – the iTunes store said that there was nothing called FindER when I did a search. I found it only by typing EMNet findER. I have the app – looks great – and I hope I never need it again!
