CushieBlog

Cushing’s Help RSS Feed

• 📰 Cushing’s Syndrome in the Elderly: Data from the European Registry on Cushing’s Syndrome
  Evaluate whether age-related differences exist in clinical characteristics, diagnostic approach and management strategies in patients with Cushing’s syndrome included in the European Registry on Cushing’s Syndrome (ERCUSYN).
• 🥼Bee’s Knees: Pre-TKR, Another Setback?
  So, I had the Medical Clearance Revision and it was exactly like the Medical Clearance I did just over 30 days ago. It looks like surgery is a go. Thursday, March 9 at 12:15. There’s extra stuff for me to do to prepare, thanks to Cushing’s, the GH deficiency, the Adrenal Insufficiency, the one kidney, etc but I can do it!
• 🖤 In Memory: Liz Raftery, March 2012
  We sadly learned that Liz died in March 2012 at the age of 45. She was an active member of the Cushing’s Help Message Boards. She had a photo gallery there. The photo below is from that gallery. Liz in 2002The image at left is from 2002. Liz wrote in her bio: Hello, I’m from Hampton, just outside London. Same old story – at least 6 years of various illnesses […]
• 🦓I t’s Kidney Cancer Awareness Month Again
  Kidney Cancer Awareness is very important to me, because I learned I had it in 2006. I’m pretty sure I had it before 2006 but in that year I picked up my husband for a biopsy and took him to an outpatient surgical center. While I was there waiting for the biopsy to be completed, I started noticing blood in my urine and major abdominal cramps. I left messages […]
• ℹ️ Cushing's Basics: What Is Cortisol And How Is It Affecting My Energy Levels?
  You may be experiencing high cortisol levels if you’re holding onto weight in your belly or face or have noticed fat deposits in your shoulder or stretch marks on your stomach. Muscle weakness, blood sugar spikes, high blood pressure and hirsutism (unwanted hair growth) may be other red flags.
• 💡 Light Up for Rare
  The National Organization for Rare Disorders (NORD) asks Americans to plan ahead to participate in the Light Up for Rare campaign to raise awareness of rare diseases. NORD is the U.S. sponsor for  Rare Disease Day  on Feb. 28. The annual awareness day spotlights approximately 7,000 rare diseases that affect more than 300 million people worldwide. More than 2 […]
• ✍️ For Rare Disease Day: MaryO, Pituitary/Kidney Cancer Bio
  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.
• 📅 What I'm Doing for Rare Disease Day
  Each and every day since 1987, I tell anyone who will listen about Cushing’s...
• 📅 Today is Rare Disease Day
  Today is Rare Disease Day. Learn all about Cushing's Disease at http://www.cushings-help.com/
• ⭐️ Top Picks on the Message Boards updated February 27, 2023
  Top content from across the message boards, hand-picked by MaryO and the Cushing's community.
• 🎤 Cushing's Support for Adults- Virtual Chat
  This virtual chat, moderated by Shauna Nelson - MAGIC's Cushing's Division Consultant, is an opportunity for adult members to share stories, discuss treatments and successes that have worked for them.
• 🙏 Update - Please Pray for the Founder of the Adrenal Alternatives Foundation
  We are so happy to report Winslow is much better. Though her blood cortisol levels are only reaching 2 despite continuous infusion, her electrolytes have stabilized.
• 🙏 Update - Please Pray for the Founder of the Adrenal Alternatives Foundation
  Update 2/12/23 Winslow is still fighting. We are awaiting medical transport to take her to another hospital that can better care for her. The medullary sponge kidney is causing major complications and negatively impacting her body's ability to retain cortisol. She's battling a lot of pain and fighting to get back to us. Please pray and send good vi […]
• ‼️ Message Board Upgrade (and new features!) Coming this Weekend
  This is our January maintenance release. During the holiday period, our focus is on providing bug fixes and improving stability.
• ⁉️What Do *You* Think? Medical Gaslighting
  So much in here is similar to what I went through during my years of being diagnosed with Cushing's.  The depression, the weight, the dismissal of everything I knew to be true about what I was feeling.
• 🙏 Update - Please Pray for the Founder of the Adrenal Alternatives Foundation
  Update- 2/6/23 As you all know, it is a fight to get cortisol coverage. This morning around 7:30, she went into crisis again. The nurse was alerted that she needed cortisol. The nurse was told by the doctor that Winslow could not have an additional dose and needed to wait until her scheduled 9:00 am dose. Her family members had to intercede to save her life. […]
• 📰 Complete and Sustained Remission of Hypercortisolism With Pasireotide Treatment of an Adrenocorticotropic Hormone (Acth)-Secreting Thoracic Neuroendocrine Tumour: an N-Of-1 Trial
  We describe a patient presenting with a typical clinical picture of Cushing’s Syndrome (CS). Further testing was diagnostic of ectopic Adrenocorticotropic Hormone (ACTH) secretion, but its origin remained occult.
• ✍️ Comment added to Shelleyw, Adrenal Bio
  your daughter likely has Cyclical Cushing, due to only one test positive, and also she has EDS, I’m a Dr. and an hEDS sufferer,
• 🙏 Please Pray for the Founder of the Adrenal Alternatives Foundation
  The founder of Adrenal Alternatives Foundation has suffered a severe adrenal crisis yesterday morning. She is alive but fighting for her life. We are unsure of the status of the Foundation at this time. This is the unfortunate reality of this disease, not even the strongest ones are exempt from the toll it takes. Keep fighting, adrenal warriors.
• 📰 An Aggressive Case of Adrenocortical Carcinoma Complicated by Paraneoplastic Cushing’s Syndrome
  Endocrinologic evaluation revealed grossly elevated 24-hour urinary free cortisol and elevated serum cortisol levels consistent with severe Cushing’s syndrome, and she was started on high-dose ketoconazole.