MaryO
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Status Updates posted by MaryO
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In Memory: Kathryn McBride ‘Bridie’ Miller Murdered May 1, 2007
'My name is Caroline and I dont post often but have met a few of you guys and read the board regularly, it has definitely been a godsend to cushies everywhere. The reason I am writing tonight is I have just received devastating information about a dear friend of mine, and a woman some of you may have met during testing. Her name is Kathryn Miller and she is a patient of Dr. Ludlam, that is how she and I met. She was diagnosed with cushings late last fall and had surgery in December and was doing pretty well afterwards...'
Read more at https://cushingsbios.com/2015/05/01/in-memory-kathryn-mcbride-bridie-miller/
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In Memory: Lori Holt
During the first few days of September 2007, Lori had surgery to remove her adrenal gland.
She experienced extreme difficulty post surgery and never recovered.Read more at https://cushingsbios.com/2015/01/06/in-memory-lori-holt/
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In Memory: Sue Koziol (SuziQ)
Sue was born in Michigan on August 08, 1946 and passed away on March 12, 2006 at the age of 59.
She was a very special friend to Cushies world-wide. We will remember her always.
Read more at https://cushingsbios.com/2015/03/12/remembering-sue-koziol-suziq/
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Message Board Upgrade Today
Please let me know if anything is not working properly. I already removed one item from the sidebar and will try to fix that soon.
Thanks!
http://cushings.invisionzone.com/ -
Myth: “All Cushing’s patients have the exact same symptoms...
Fact: Everyone does NOT have the exact same symptoms. Not all Cushing’s patients are exactly the same. This is one mistake that non experts tend to make in terms of categorizing patients by whether they meet the exact same classic symptoms or not...
Read more at https://cushieblogger.com/2017/04/20/myth-all-cushings-patients-have-the-exact-same-symptoms/
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Myth: “It is MY fault that I got Cushing’s. I did something wrong that caused me to be sick!
Fact: This is a very controversial topic because we don’t like to talk about it. However, many people struggle with this myth.
Read more at https://cushieblogger.com/2017/04/12/myth-it-is-my-fault-that-i-got-cushings/
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Myth: Even Though You Are Chronically Ill, You Should Have The Same Amount Of Energy Every Day…
Christine Miserandino (2010) uses the spoon theory to answer the question, “What does it feel like to be sick?” The spoons serve as a symbol for resources available and energy spent to get through every moment of every day.
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Myth: “Each Person Requires the Same Dose of Steroid in Order to Survive…
Fact: In simple terms, Adrenal Insufficiency occurs when the body does not have enough cortisol in it. You see, cortisol is life sustaining and we actually do need cortisol to survive. You have probably seen the commercials about “getting rid of extra belly fat” by lowering your cortisol. These advertisements make it hard for people to actually understand the importance of the function of cortisol....
Read more at https://cushieblogger.com/2017/04/22/myth-each-person-requires-the-same-dose-of-steroid-in-order-to-survive/
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Myth: “It is MY fault that I got Cushing’s. I did something wrong that caused me to be sick!
Fact: This is a very controversial topic because we don’t like to talk about it. However, many people struggle with this myth.
Read more at https://goo.gl/SPthiu
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New Cushie added to the Cushing's MemberMap.
Holly W is from Harper, TX She is not yet diagnosed with Cushing's.
See the map at https://goo.gl/EKpyqr
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New Helpful Doctor added to Alaska
Dr. Ahmed is professional, thorough with his research, thoughtful, and thinks I'm his star Cushing's patient (I'm his only Cushing's patient).
https://cushieblogger.com/2018/11/06/helpful-doctors-alaska/
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Nicola C (Nikkikicks), Undiagnosed Bio
Nicola is from Denver, Colorado She was in a car accident in 7/17 and had prednisone. That is when her symptoms started.
Read more at https://cushingsbios.com/2019/01/09/nicola-c-nikkikicks-undiagnosed-bio/
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NIH Clinical Center: Facts at a Glance
As a research facility, only patients with the precise kind or stage of illness under investigation are admitted for treatment at the NIH Clinical Center. There are no labor and delivery services and no other services common to community hospitals.
Read more at https://www.cc.nih.gov/about/welcome/fact.html
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Patient’s Atypical Cushing’s Symptoms Lead to Discovery of Novel Genetic Mutations
Primary bilateral macronodular adrenal hyperplasia (PBMAH) is a disorder characterized by multiple lumps in the adrenal glands and excessive cortisol production. It is a rare cause of Cushing’s syndrome...
...Overall, the study “highlights the importance of early recognition of atypical symptoms of Cushing’s syndrome such as exophthalmos, which would save the patient from harmful effects of excessive cortisol exposure,” the researchers said.
Read more at https://cushieblog.com/2018/02/14/patients-atypical-cushings-symptoms-lead-to-discovery-of-novel-genetic-mutations/
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Rare Disease Day
Each and every day since 1987, I tell anyone who will listen about Cushing’s...
Read more at https://cushieblogger.com/2018/02/28/rare-disease-day/
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Sheryl, Pituitary Bio
Sheryl is from Florida. Her journey started about 7 years ago with severe insomnia, muscle and joint aches. She was deteriorating so rapidly that I decided to go to LA and see Dr. Theodore Friedman (Dr. F)
Read more at https://cushingsbios.com/2019/03/06/sheryl-pituitary-bio/
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Stefanie, Pituitary Bio
Stefanie is from Michigan She was diagnosed in 2012 and had pituitary surgery done 2013. She is currently on medications.
Read more at https://cushingsbios.com/2019/01/11/stefanie-pituitary-bio/
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The Pituitary Gland: Small But Mighty
Not only does the pituitary make its own hormones, but it also triggers hormone production in other glands. The pituitary is aided in its job by the hypothalamus. This part of the brain is situated above the pituitary, and sends messages to the gland on when to release or stimulate production of necessary hormones.
Read more at https://cushieblog.com/2016/12/31/the-pituitary-gland-small-but-mighty/
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Transsphenoidal Surgery Leads to Remission in Children with Cushing’s Disease
Transsphenoidal surgery — a minimally invasive surgery for removing pituitary tumors in Cushing’s disease patients — is also effective in children and adolescents with the condition, leading to remission with a low rate of complications, a study reports.
The research, “Neurosurgical treatment of Cushing disease in pediatric patients: case series and review of literature,” was published in the journal Child’s Nervous System.
Read more at https://cushieblog.com/2019/01/19/transsphenoidal-surgery-leads-to-remission-in-children-with-cushings-disease/
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Tumors in Cushing’s Patients Have Distinct Genetic Profiles
Based on their genetic profile, researchers were able to cluster tumors into three distinct subgroups...
Collectively, the findings add new clues to the molecular mechanisms involved in the progression of benign pituitary tumors. They also provide new ground for developing targeted therapies, the researchers said.
Read more at https://cushieblog.com/2018/06/23/tumors-in-cushings-patients-have-distinct-genetic-profiles/
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Update on the Treatment of Pituitary Diseases:
Emerging TherapiesThis course is suited for medical professionals, patients, and caregivers to improve patient care and outcomes through evidence-based discussion of clinical practice guidelines and emerging therapies in order to assess and update current practices to promote earlier diagnosis and treatment of pituitary diseases.
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Webinar:Treatment Strategies for Prolactinomas
Learning Objectives:
- To understand the medical therapies for prolactinomas
- To understand the roles of surgery for prolactinomas
- To understand the roles of radiation for prolactinomas
Read more at https://cushieblogger.com/2019/01/04/webinartreatment-strategies-for-prolactinomas/
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What You Should Know About Pituitary Tumors
Treatments may include surgery, radiation therapy or medication. Transsphenoidal surgery is surgery performed through the nose and sphenoid sinus (located in the very back part of the nose, just beneath the base of the brain) to remove a pituitary tumor. It can be performed with an endoscope, microscope or both and is a team effort between neurosurgeons and ear, nose and throat (otolaryngology/ENT) surgeons. Radiation therapy uses high-energy x-rays to kill the tumor cells and is recommended when surgery is not an option, if the pituitary tumor remains, or if the tumor causes symptoms that are not relieved by medicine.
Read more at https://cushieblog.com/2017/02/15/what-you-should-know-about-pituitary-tumors/
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What You Should Know About Pituitary Tumors
Treatments may include surgery, radiation therapy or medication. Transsphenoidal surgery is surgery performed through the nose and sphenoid sinus (located in the very back part of the nose, just beneath the base of the brain) to remove a pituitary tumor. It can be performed with an endoscope, microscope or both and is a team effort between neurosurgeons and ear, nose and throat (otolaryngology/ENT) surgeons. Radiation therapy uses high-energy x-rays to kill the tumor cells and is recommended when surgery is not an option, if the pituitary tumor remains, or if the tumor causes symptoms that are not relieved by medicine.Read more at https://cushieblog.com/2017/02/15/what-you-should-know-about-pituitary-tumors/
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Yes, You Need a Medical Alert Bracelet!
#3– DO NOT MAKE IT “PRETTY” OR “NOT SO OBVIOUS”. I can not stress this enough. Ladies I know that you want the cute ones that look like normal bracelets, and have pretty charms, etc on them… THE ENTIRE point of a medical alert bracelet is that someone needs to see it and know that they should look at it. If it looks like a regular bracelet or regular necklace and it isn’t obvious within the first 3 seconds once we get to you and look in the obvious places (neck/wrist). it will NOT get seen. I promise you, we are too busy trying to play the guessing game of why you are not responding, than to take a look at every single piece of regular jewelry and see if it might have a really small inscribing of what is wrong with you. Once again. Make it noticeable. We will see that we need to look at it. Once we do. The guessing game is more than likely OVER. and we can begin to treat you appropriately.
Read more at https://cushieblog.com/2017/07/18/yes-you-need-a-medical-alert-bracelet/
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So true Mary. I was in Germany when I went into adrenal crisis at the airport. The paramedics didn't speak English that well. I was close to syncope and had to mime my finger going into the crook of my elbow to make them understand I needed an IV immediately. I did have an obvious medic alert bracelet on, but found out later through the medic alert foundation that Germany isn't part of their program and therefore didn't recognize my bracelet. Not every country participates in the medic alert program. I was told, I should have had a letter with the pertinent details of my medical condition on me and written in the language of the place I was traveling to. Good advice for future travel. Had that country been a part of the medic alert program it would have been so much easier for them to read the bracelet and proceed. Unless you are in that position you have no idea how terrifying it is when you can't convey the information you need. I was going into shock and my mouth was drying out so bad, I couldn't speak. I didn't think they would figure it out in time. Time is everything in crisis. That's why an obvious medic alert bracelet is needed.
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How scary! I'll have to remember to take a letter with me if I go out of the country again.
I also have a letter for my growth hormone to be able to travel with needles and such. I should probably get that translated, as well.
Thanks - I'm glad your situation worked out ok in the end!
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