Michelle is from Columbia, MO. She was diagnosed with Cushing's in 2020 and had pituitary surgery. This year, it appeared that she had PCOS but it turned out to be a recurrence.
This case report illustrated how a Low Carb diet was initially successful at ameliorating the patient’s associated symptoms of hypertension and obesity, making his diagnosis of Cushing's Disease go undetected.
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 […]
Ectopic Cushing’s syndrome due to metastatic neuroendocrine small-cell carcinoma is a rare condition with a poor prognosis. The options for treatment are few and not necessarily curative. There needs to be increased awareness of this serious and rare complication. Managing the condition can be a challenge and requires a multidisciplinary team approach to imp […]
Happy birthday Dr. Friedman! Thank you for all you do and for the incredible impact you are making in the world! Join us in wishing Dr. Friedman a joyous and healthy year ahead!
Version 4.7.4 of Invision Community is now available This is our November maintenance release. Key changes include: New Feature: Moderating with Personal Alerts New Feature: Moderator approval queue now includes a reason why Updated: Events update includes additional streaming platforms Invision Community now requires a minimum of PHP 8.0 Also included: 4.7. […]
More from Facebook, 2022 - Janice said "I’m so happy that you documented your life. And am grateful you gave up so Much of your life to raise awareness for our disease....If it weren’t for the support that you have provided all of us over the years life would be so Much more difficult. Thanks for everything you’ve done and continue to do" Marie sai […]
This extended evaluation (EE) of the SONICS study assessed effects of levoketoconazole for an additional 6 months following open-label, 6-month maintenance treatment in endogenous Cushing’s syndrome.
From Facebook, 2022: Gina said Grateful for you MaryO!!! You're not gonna know till you get to heaven how many people you helped thru your tireless advocacy!
Cushing’s disease (CD) is a serious endocrine disorder caused by an adrenocorticotropic hormone (ACTH)-secreting pituitary neuroendocrine tumor (PitNET) that stimulates the adrenal glands to overproduce cortisol. Chronic exposure to excess cortisol has detrimental effects on health, including increased stroke rates, diabetes, obesity, cognitive impairment, a […]
Dear friends and family: I am writing this letter to share with you some basic facts about Cushing’s Disease/Syndrome and the recovery process so that you will have sufficient information to form realistic expectations about me and my ability to engage in certain activities in light of this disease and its aftermath. As you know, Cushing’s is a rarely diagno […]
Today is the anniversary of MaryO's pituitary surgery at NIH in 1987. 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.
Jason is from England. Pituitary tumour found in 2020(posterior lobe),now test after test and 2nd MRI still shows microadenoma. He also had two traumatic brain injuries.
The first-line treatment for Cushing’s disease is transsphenoidal surgery, after which the rates of remission are 60 to 80%, with long-term recurrence of 20 to 30%, even in those with real initial remission. Drug therapies are indicated for patients without initial remission or with surgical contraindications or recurrence, and ketoconazole is one of the mai […]
I have a tumour on my right adrenal gland and diagnosed with Cushings 3 years ago . Covid got in the way of surgery initially so now I wait and I wait. I try to keep going but I really just want to stay in bed as I’ve little energy, poor concentration and less interest…
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!
CushieBlog 