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Top content from across the community, hand-picked by us.

Anyone ever used a Rife Machine on Cushings syndrome?
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Do you think allergies are worse post-op?

I posted on Facebook that I've learned the hard way that I had an allergic reaction to blackberries. I've known about my strawberry allergy for decades and have avoided them mostly successfully. Apparently, they're both in the same class of allergens 

These blackberries were in an ice cream. And it was a good ice cream. Drat!

I have a lot more steroids to take for a few days. Oh, joy! And, another wean at the end.

Someone responded: "The further we get from Cushings, the more allergies surface. So glad you got help. Scary stuff!

I said: "I guess it's because we don't have so much cortisone already running in our bodies."






















 



Someone else asked: "Is that true? I seem to be allergic to pollen amd mold now?"





 



And I responded: "I don't know but it makes sense now that I think of it. I'm definitely allergic to more things than I was Before Cushing's"






 









So, in my informal poll - what do you think?  Are your allergies worse or are you having new ones after Cushing's?
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Post-traumatic stress disorder (PTSD) following Cushing’s disease is a real issue many of us face. However, we don’t have to let it control our lives — there are ways to cope.

Cushing’s changes us both mentally and physically. We become forgetful. We lose strength. We become someone we don’t recognize in the mirror. We lose hair on our heads and gain it everywhere else. We’re always in pain, and we’re always sick, with no end in sight (or at least it feels that way).

Some days will be trying and seem as if nothing seems to work, no matter what you do. I promise that you’re not alone, and you will make it through those days.

Following are a list of ways to deal with post-surgery scares:

Therapy/counseling: If you can afford it, talk with a professional about your health worries and how your anxiety affects you. It takes the burden off your caregivers who don’t like to see you suffer because they care so much.


Journaling: Journaling is a therapeutic and inexpensive way to let out your worries. Documenting your anxieties can help you keep track of how your thought processes are changing. Writing out your stresses is cathartic. Give it a try — if you haven’t already.


Yoga or any light exercise: If you’re in the early stages of recovery, you shouldn’t go straight back to the gym — working out is a stressor on the body. Light yoga, such as restorative yoga, in which you practice stretching, deep breathing, and relaxation, will help your mind and body to recover. Light walks are amazing for the brain and body post-surgery.


Delve into things you enjoy: Read, cook, go for walks, sit outside, etc. Do whatever feeds your soul and keeps your mind free from negative thoughts. Feeding your soul is one sure way to keep your mind and body happy and healthy.


Other ideas from the CushieWiki


Please share your ideas in the comments to this post. 



Adapted from https://cushingsdiseasenews.com/2018/10/19/cushings-post-surgery-anxieties-ptsd-post-traumatic-stress-disorder-journaling-yoga-therapy/
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Barrow Neurological Institute
Sonntag Pavilion
St. Joseph’s Hospital and Medical Center
350 West Thomas Road, Phoenix, AZ 85013

October 27, 2018
8:30 AM to 4:00 PM

The Barrow Pituitary Center is dedicated to educating patients, caregivers, and loved ones by providing information which is current and non-biased. Experts at this conference will address management of the emotional and physical elements of living with pituitary disorders. We hope attendees will leave empowered to make better-informed decisions about their healthcare and achieve their goals for a long and fruitful life.

Event Flyer or to register, visit the Barrow Website

For more information contact Maggie Bobrowitz, RN, MBA, at (602) 406-7585 or Margaret.Bobrowitz@DignityHealth.org.
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Friday, October 19 at 8:00am to 4:00pm

Belfer Research Building, 3rd Floor

413 East 69th St., New York, NY 10021

This course is a comprehensive overview and discussion of the evaluation; management; and medical, surgical, and radiation treatments of the pituitary tumor. The conference will comprise lectures, case-based talks, and Q&A panel sessions.

The pituitary gland plays an enormously important role in human development, the maintenance of various essential physiologic functions, and aging and senescence. Hence, the health of the pituitary gland is critical at all stages of human life. For this reason, there are a variety of pituitary disorders that can have a profound impact on multiple organ systems at different ages. General practitioners and even specialists in endocrinology may not be fully aware of the widespread impact of the pituitary gland in health and disease; the function of this course is to educate and inform a general medical audience on pituitary disease.

For more information visit their website or contact Tatiana Soto at tas2041@med.cornell.edu or 212-746-0403.
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Cushing’s syndrome patients with tumors on both adrenal glands — which sit on top of the kidneys — could undergo adrenal venous sampling, a procedure where blood samples are taken from both adrenal glands to determine which tumors to remove, researchers suggest.
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If you are unable to attend in person, please join us on our Facebook Live Stream!
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Bilateral adrenalectomy, in which the adrenal glands are removed, has a bigger negative impact on the quality of life of patients with Cushing’s disease than other treatment options, a recent study suggests.

This may be due to the longer exposure to high levels of cortisol in these patients, which is known to greatly affect their quality of life, the authors hypothesize.

The study, “Bilateral adrenalectomy in Cushing’s disease: Altered long-term quality of life compared to other treatment options,” was published in the journal Annales d’Endocrinologie.

Cushing’s disease is caused by a tumor in the pituitary gland in the brain that secretes large amounts of adrenocorticotropic hormone, which, in turn, stimulates the adrenal glands to produce high levels of cortisol (a glucocorticoid hormone).

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We have a new form to add your own bio! Try it out here: https://cushingsbios.com/2018/08/28/we-have-a-new-bio-form/  

Thank you for submitting your bio - sometimes it takes a day or so to get them formatted for the website and listed on the pages where new bios are listed. If you are planning to check the button that reads "Would you like to be considered for an interview? (Yes or No)" please be sure to read the Interview Page for information on how these interviews work.

Please do not ask people to email you answers to your questions. Your question is probably of interest to other Cushing's patients and has already been asked and answered on the Message Boards. Occasionally, people may comment on your bio. To read your bio and any comments, please look here for the date you submitted yours and click on the link.

Please post any questions for which you need answers on the message boards.

 

 
HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki
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I think I knew this already but it's still hard to read in print

 

Functional remission did not occur in most patients with Cushing syndrome who were considered to be in biochemical and clinical remission, according to a study published in Endocrine. This was evidenced by their quality of life, which remained impaired in all domains.

The term “functional remission” is a psychiatric concept that is defined as an “association of clinical remission and a recovery of social, professional, and personal levels of functioning.” In this observational study, investigators sought to determine the specific weight of psychological (anxiety and mood, coping, self-esteem) determinants of quality of life in patients with Cushing syndrome who were considered to be in clinical remission.

The cohort included 63 patients with hypercortisolism currently in remission who completed self-administered questionnaires that included quality of life (WHOQoL-BREF and Cushing QoL), depression, anxiety, self-esteem, body image, and coping scales. At a median of 3 years since remission, participants had a significantly lower quality of life and body satisfaction score compared with the general population and patients with chronic diseases. Of the cohort, 39 patients (61.9%) reported having low or very low self-esteem, while 16 (25.4%) had high or very high self-esteem. Depression and anxiety were seen in nearly half of the patients and they were more depressed than the general population. In addition, 42.9% of patients still needed working arrangements, while 19% had a disability or cessation of work.

Investigators wrote, “This impaired quality of life is strongly correlated to neurocognitive damage, and especially depression, a condition that is frequently confounded with the poor general condition owing to the decreased levels of cortisol. A psychiatric consultation should thus be systematically advised, and [selective serotonin reuptake inhibitor] therapy should be discussed.”

Reference

Vermalle M, Alessandrini M, Graillon T, et al.  Lack of functional remission in Cushing's Syndrome [published online July 17, 2018]. Endocrine. doi:10.1007/s12020-018-1664-7

From https://www.endocrinologyadvisor.com/general-endocrinology/functional-remission-quality-of-life-cushings-syndrome/article/788501/
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Metyrapone treatments helped patients with Cushing syndrome reach normal, urinary-free cortisol levels in the short-term and also had long-term benefits, according to a study published in Endocrine.

This observational, longitudinal study evaluated the effects of the 11β -hydroxylase inhibitor metyrapone on adult patients with Cushing syndrome. Urinary-free cortisol and late-night salivary cortisol levels were evaluated in 31 patients who were already treated with metyrapone to monitor cortisol normalization and rhythm.

The average length of metyrapone treatment was 9 months, and 6 patients had 24 months of treatment. After 1 month of treatment, the mean urinary-free cortisol was reduced from baseline by 67% and mean late-night salivary cortisol level decreased by 57%. 

Analyzing only patients with severe hypercortisolism, after 1 month of treatment, the mean urinary-free cortisol decreased by 86% and the mean late-night salivary cortisol level decreased 80%. After 3 months, normalization of the mean urinary-free cortisol was established in 68% of patients. Mean late-night salivary cortisol levels took longer to decrease, especially in severe and very severe hypercortisolism, which could take 6 months to drop. Treatment was more successful at normalizing cortisol excretion (70%) than cortisol rhythm (37%). Nausea, abdominal pain, and dizziness were the most common adverse events, but no severe adverse event was reported.

Future research is needed to evaluate a larger cohort with randomized dosages and stricter inclusion criteria to evaluate metyrapone's effects on cortisol further.

Study researchers conclude that metyrapone was successful and safe in lowering urinary-free cortisol after just 1 month of treatment and controlling long-term levels in patients with Cushing syndrome.

This study was supported by Novartis.

Reference

Ceccato F, Zilio M, Barbot M, et al. Metyrapone treatment in Cushing's syndrome: a real-life study [published online July 16, 2018]. Endocrine. doi: 10.1007/s12020-018-1675-4

From https://www.endocrinologyadvisor.com/general-endocrinology/metyrapone-cushing-syndrome/article/786716/
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Many thanks to everyone who is making a difference and helping Cushing's Help stay afloat for another year!

Your donation helped pay for the message boards, the main website, the Cushie Wiki and several blogs.

 


 
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This is something that we're playing on a FaceBook group I'm in.  I thought it might be fun to try here as an icebreaker, like an online Tupperware party.

4 of these are true and one is a lie - guess which is the iie and add your own:

 

My family nearly drowned in a hurricane but a truck pushed our car to safety

I pierced my own ears when I was 14

I was on a special tour of the White House and the First Lady stopped to say hello. 

I almost didn’t graduate from college because I was scared to dive into the pool

I spent several years playing piano for a therapy group at St Elizabeths Hospital. John Hinckley was not a part of the group.
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I was absolutely blown away this morning when I got this in my messages:


 

 

Thanks so much, everyone!
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It's unbelievable but the idea for Cushing's Help and Support arrived 18 years ago last night.  That's a long time for anything online.

I was talking with my dear friend Alice, who ran a wonderful menopause site called Power Surge, wondering why there weren't many support groups online (OR off!) for Cushing's and I wondered if I could start one myself and we decided that I could.

The first website (http://www.cushings-help.com) first went "live" July 21, 2000 and the message boards September 30, 2000. Hopefully, with these sites, I'm making some helpful differences in someone else's life!

The message boards are very active and we have weekly online text chats, occasional live interviews, local meetings, email newsletters, a clothing exchange, a Cushing's Awareness Day Forum, podcasts, phone support and much more.

Whenever one of the members of the boards gets into NIH, I try to go to visit them there. Other board members participate in the "Cushie Helper" program where they support others with one-on-one support, doctor/hospital visits, transportation issues and more.

Of course, we now have a Facebook page and 2 groups.  Both are secret, so if you want to join, please email  or PM me for an invitation.

Other sites in the Cushing's Help "Family"

ADDISON’S DISEASE

Addison’s Help


Addison’s Help (Blog)


Addison’s knol


Cushing’s and Addison’s Documents


Cushing’s Help Message Boards


Cushing’s News Feed  This is also found on the right sidebar here.


CUSHING’S DISEASE / SYNDROME

Cushie Blogger, mostly used for Cushing's Awareness Posts and meeting information


Cushie Bloggers (Blog)


Cushie Info


CushieWiki


Cushing’s and Addison’s Documents


Cushing’s and Cancer (Blog)


Cushing’s Bios


Cushing’s Disease/Syndrome Knol


Cushing’s Help


Cushing’s Help and Support


Cushing’s Help Live Interviews


Cushing’s Help Message Boards


Cushing’s Help Organization


Cushing’s Help Podcasts


Cushing’s News Feed


Cushing’s Support


My Cushing’s Bio


FACEBOOK

Cushings Help Organization, Inc


2 Secret Groups.  If you want to join, please email  or PM me for an invitation.


PINTEREST

Cushings Help Organization, Inc


TUMBLR

Cushings Help Organization, Inc



TWITTER

Cushings Help Organization, Inc



If you're interested in my non-Cushing's stuff (YES! I have a life), please see this list: http://www.maryo.co/other-sites/

Here's to another year of Cushing's Help and Support!

 

 
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TOPICS TO BE DISCUSSED INCLUDE:

 

HOW IMPORTANT IS THE TPO ANTIBODY IN THE DIAGNOSIS OF HYPOTHYROIDISM?

WHAT DOES IT MEAN TO HAVE HASHIMOTO’S?

WHICH THYROID MEDICINE IS THE BEST?

WHAT IS THE DIFFERENCE BETWEEN DESICCATED THYROID AND SYNTHETIC THYROID HORMONES?

WHAT ABOUT TAKING ONLY T3?

IS RT3 IMPORTANT?

IS DIET IMPORTANT IN PATIENTS WITH HYPOTHYROIDISM?

 

SUNDAY • JULY 29TH • 6 PM PST

 

Click here to join the meeting or
https://axisconciergemeetings.webex.com/axisconciergemeetings/j.php?MTID=m2b7d2348ee2683a5022761e3e5945087
OR
Join by phone: (855) 797-9485
Meeting Number (Access Code): 287 970 949, Meeting Password: hormone

Your phone/computer will be muted on entry. There will be plenty of time for questions using the chat button.
For more information, email us at mail@goodhormonehealth.com.
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Presented by

Eliza Geer, MD
Medical director, Multidisciplinary Pituitary & Skull Base Tumor Center
Associate Attending, Endocrine Service
Memorial Sloan Kettering Cancer Center


After registering you will receive a confirmation email with details about joining the webinar.

Contact us at webinar@pituitary.org with any questions or suggestions.


Date: Wednesday, July 18, 2018
Time: 10:00 AM - 11:00 AM Pacific Daylight Time 1:00 PM - 2:00 PM Eastern Daylight Time

Webinar Description:

Learning Objectives:

Review Cushing’s disease treatment guidelines

Evaluate currently available medical therapies for Cushing’s disease

Discuss new therapies in clinical trials

Presenter Bio:

Dr. Geer is an endocrinologist who specializes in caring for people with pituitary and neuroendocrine diseases. She is the Medical Director of Memorial Sloan Kettering’s Multidisciplinary Pituitary & Skull Base Tumor Center, located at Memorial Hospital in Manhattan. Their multidisciplinary pituitary team provides personalized surgical and medical treatment for people with pituitary and skull base tumors, including prolactinomas, growth-hormone secreting adenomas (acromegaly), and Cushing’s disease. Their overall goal is to improve and advance the care of people with these conditions.

Dr. Geer’s research interests focus on achieving a better understanding of how and why pituitary tumors develop, and characterizing long-term outcomes in patients with Cushing’s disease. She has conducted a number of studies investigating body composition, adipose tissue regulation, and appetite in patients with Cushing’s disease, and she is involved in clinical trials investigating new medical therapies for patients with Cushing’s and acromegaly.

Dr. Geer completed her internship and residency at the NewYork-Presbyterian Hospital/Columbia Medical Center. She was a fellow in endocrinology and metabolism at the Icahn School of Medicine/Mount Sinai Medical Center, after which she was a member of the faculty for ten years. She is currently an associate professor of medicine and an active member of the Endocrine Society, the Pituitary Society, the Pituitary Network Association and the American Association of Clinical Endocrinologists.
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Top Doctors Receiving Payments From Corcept, makers of Korlym

Totals listed account for all payments from August 2013 to December 2015.

DOCTOR


PAYMENTS






PEJMAN COHAN

Endocrinology, Diabetes & Metabolism

BEVERLY HILLS, CA

$80,916





RICHARD AUCHUS

Endocrinology, Diabetes & Metabolism

ANN ARBOR, MI

$43,500





AMIR HAMRAHIAN

Endocrinology, Diabetes & Metabolism

CLEVELAND, OH

$36,287





ALAN COHEN

Endocrinology, Diabetes & Metabolism

MEMPHIS, TN

$32,714





JAMES FINDLING

Endocrinology, Diabetes & Metabolism

MENOMONEE FALLS, WI

$26,153





TY CARROLL

Endocrinology, Diabetes & Metabolism

MENOMONEE FALLS, WI

$20,779





ANDREAS MORAITIS

Endocrinology, Diabetes & Metabolism

MIAMI BEACH, FL

$19,605





TODD FRIEZE

Endocrinology, Diabetes & Metabolism

BILOXI, MS

$18,333





KIMBERLEY BOURNE

Endocrinology, Diabetes & Metabolism

ORLANDO, FL

$14,057





JAGDEESH ULLAL

Endocrinology, Diabetes & Metabolism

NORFOLK, VA

$12,167







Top Teaching Hospitals Receiving Payments From Corcept, makers of Korlym

Totals listed account for all payments from August 2013 to December 2015.

HOSPITAL


PAYMENTS






HOSPITAL OF THE UNIV OF PENNA

PHILA, PA

$5,000





UNIVERSITY OF LOUISVILLE HOSPITAL

LOUISVILLE, KY

$5,000





UNIV OF MISSOURI HEALTH CARE

COLUMBIA, MO

$3,183





NATIONAL JEWISH HEALTH

DENVER, CO

$2,500





CEDARS-SINAI MEDICAL CENTER

LOS ANGELES, CA

$2,500





TEMPLE UNIVERSITY HOSPITAL

PHILADELPHIA, PA

$2,000





MOUNT SINAI HOSPITAL

NEW YORK, NY

$2,000





ADVOCATE LUTHERAN GENERAL HOSPITAL

PARK RIDGE, IL

$1,700





ALLEGHENY GENERAL HOSPITAL

PITTSBURGH, PA

$1,500





HENRY FORD HOSPITAL

DETROIT, MI

 

See if your doctor is making money from this drug here:
https://projects.propublica.org/docdollars/company/corcept-therapeutics

$1,500
    • Wow!
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Are Sleep Apnea and Snoring the causes of your Weight Gain and Fatigue?

Dr. Theodore Friedman hosts Jay Khorsandi, DDS from Snore Experts for a fascinating webinar on the relationship between Sleep Apnea, Snoring, Weight Gain and Daytime Fatigue.

Topics to be discussed include:
• Why does poor sleep lead to weight gain and fatigue?
• Why are home sleep monitors better than in lab monitors?
• What are the treatments for Sleep Apnea and Snoring?
• Will the treatments lead to weight loss and more energy?
• Dr. Friedman will also add some comments about the endocrine effects of poor sleep.
Sunday • June 24th • 6 PM PST

Click to start webinar at
https://axisconciergemeetings.webex.com/axisconcierg…/j.php…
OR
Join by phone: (855) 797-9485

Meeting Number (Access Code): 287 844 283 Your phone/computer will be muted on entry. There will be plenty of time for questions using the chat button.

Meeting Password: dreams
For more information, email Dr. Friedman at mail@goodhormonehealth.com
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Join us on Saturday, October 13, 2018

10th Annual Johns Hopkins Pituitary Patient Day
Saturday, October 13, 2018, 9:00 a.m. to 3:00 p.m.

Location:
Johns Hopkins Mt. Washington Conference Center
5801 Smith Avenue
Baltimore, MD 21209
map and directions

Attendance and parking are free, but seating is limited. Reserve your space now: Please R.S.V.P. by email (preferred) to PituitaryDay@jhmi.edu  or by calling 410-670-7259.

Agenda

9:00 - 9:25 a.m.: Registration

9:25 - 9:30 a.m.: Welcome and acknowledgments (Roberto Salvatori, M.D.)

9:30 - 10:00 a.m.: Symptoms of Pituitary Tumors: Acromegaly, Cushing, and Non-Functioning Masses (Roberto Salvatori, M.D.)

10:00 - 10:30 a.m.: Effects of Pituitary Tumors on Vision (Amanda Henderson, M.D.)

10:30 - 11:00 a.m.: A Patient's Story (to be announced) 

11:00 - 11:30 a.m.: The Nose: the Door to Access the Pituitary Gland (Murray Ramanathan, M.D.)

11:30 a.m. - 12:00 p.m.: Surgery for Pituitary Tumors: Images from the Operating Room (Gary Gallia, M.D., Ph.D.)

12:00 - 12:30 p.m.: Radiation Therapy for Cushing, Acromegaly and Non-Functioning Tumors: When Needed, A Good Option (Kristin Redmond, M.D.)

12:30 - 1:25 p.m.: Lunch

1:30 - 3:00 p.m. Round Table Discussions:

Acromegaly


Cushing Disease


Non-Functioning Adenomas


Craniopharyngiomas and Rathke's Cysts



 

 
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im new to this and really am scared so i thought i would reach out
    • Welcome!
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Presented By

Daniel Prevedello, MD

Professor, Department of Neurological Surgery
Director, Minimally Invasive Cranial Surgery Program
Co-Director, Comprehensive Skull Base Center at The James
Director, Pituitary Surgery Program
The Wexner Medical Center at The Ohio State University


After registering you will receive a confirmation email with details about joining the webinar.

Contact us at webinar@pituitary.org with any questions or suggestions.

Date: May 8, 2018

Time: 3:00 - 4:00 PM Pacific Daylight Time, 6:00 - 7:00 PM Eastern Daylight Time

Webinar Information:

Learning Objectives:

Understand the importance of gland function preservation during pituitary surgery.


Understand the importance of preserving nose function related to the approach.


Understand the importance of team work in pituitary surgery



Presenter Bio

Dr. Prevedello is a professor in the Department of Neurological Surgery, and the director for the Minimally Invasive Cranial Surgery Program. He is one of only a few neurosurgeons in the world who have performed more than 1,000 Endoscopic Endonasal Approach (EEA) cases. EEA is a minimally invasive surgery technique that gives surgeons access to the base of the skull, intracranial cavity and top of the spine by operating through the nose and paranasal sinuses. Dr. Prevedello was rated in the top 10 percent of physicians in the nation for patient satisfaction in 2016 and 2017.

Dr. Prevedello’s current research focus is on developing minimally invasive approaches to the brain and skull base that will result in the best surgical tumor resection possible with the least amount of disruption to normal tissue. Finding a patient treatment option that reduces the amount of long-term consequences for patients and their families is always his top priority.

Dr. Prevedello's medical journey began in Brazil, where he attended medical school and finished his residency in 2005. He completed fellowships in neuroendocrine and pituitary surgery at the University of Virginia, and another in skull base and cerebrovascular surgery at the University of Pittsburgh.
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The EPIC Foundation would like to recognize Mary Kelly O’Connor as a pioneer in the Cushing’s community as an advocate and life changer!Mary Kelly O’Connor is definitely someone you should know!
    • Wow!
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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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Hello!

I was diagnosed with Cushing's disease almost two years ago--it was the slow-developing variety and had been impacting me for years without my knowledge.  Luckily, as soon as we suspected, all of my tests showed exactly what they were supposed to, and I got my diagnosis quickly.  My tumor was removed in June 2016, but my recovery has been painfully slow.  My cortisol and ACTH levels continue to be low, and my endocrinologist has not even started backing me off of my Prednisone.  I had to quite my job and move back in with my parents for support.  After the last test, she said that maybe it would never come back.  I am wondering if anyone else has experienced that--a complete surgical CURE, but then no RECOVERY.  I am a teacher and just tried to returned to the classroom this semester, but I feel so fatigued I worry I may have to permanently change careers.

Sarah
    • Welcome!
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