Notes on the Magic Foundation Cushing’s Conference, 2012

Posted on July 23, 2012 by MaryO

Here are links to all the posts in order, although some still need to be edited.  I posted these directly from the meeting hall with no rereads or rewrites.  If anyone has anything to add, edit or delete, please let me know!

 

  • Magic Conference: Understanding your Pituitary Gland in Health and Disease

Dr. Frohman will present an overview of the pituitary gland. He will cover general aspects of pituitary function and testing and also review the types of pituitary disease that occur, including pituitary tumors and Sheehan’s Syndrome. Many people ask and wonder if Growth Hormone Deficiency can be inherited. Dr. Frohman will also briefly address that concern.

 

http://cushingshelp.blogspot.com/2012/07/magic-conference-understanding-your.html

 

  • Magic Conference: Testing and Diagnosis Process for Pituitary Disorders

Pituitary disorders can be difficult to diagnose in many cases. Dr. Salvatori will discuss the different testing and diagnostic procedures to determine the pituitary disorder. MAGIC receives many calls asking about diagnostic procedures. This segment will be helpful in understanding what procedures are used today to provide the best treatment available.

http://cushingshelp.blogspot.com/2012/07/magic-conference-testing-and-diagnosis.html

 

  • Magic Conference: Managing Medications and Aftercare of Treatments

It is crucial to monitor your treatments and aftercare of treatments when living with a pituitary disorder. Dr. Salvatori will discuss the importance of these issues so you will be aware of how to manage your pituitary disorder. A simple diagnosis does not mean that medications may be altered or changed in the future. This segment will assist you with information on how to manage your future.

http://cushingshelp.blogspot.com/2012/07/magic-conference-managing-medications.html

 

  • Magic Conference: Cushing’s Disease, Are We Closer to Medical Therapies?

A significant proportion of patients with Cushing’s Disease are not cured by primary surgical treatment, the disease is prone to relapse and significantly damages quality of life. Adjuvant radiotherapy is an increasingly unattractive option for clinicians who wish to spare their patients hypopituitarism and other potential complications. Some pharmacological options are currently available but tend to have dose-limiting side effects. New agents recently approved or under investigation will be discussed and strategies to select the optimal drug or drug combination for individual patients reviewed.

http://cushingshelp.blogspot.com/2012/07/magic-conference-cushings-disease-are.html

 

  • The Trip So Far…

MaryO’s personal experiences and thoughts

http://cushingshelp.blogspot.com/2012/07/the-trip-so-far.html

 

  • Cushing’s Help Turned Twelve During the Conference!

Twelve  years ago I was talking with my dear friend Alice, who runs a wonderful menopause site, 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.  We decided that I could.

This website (http://www.cushings-help.com) first went “live” July 21, 2000 and the message boards September 30, 2000. Hopefully, with this site, I’ve made  some helpful differences in someone else’s life.

http://cushingshelp.blogspot.com/2012/07/today-we-twelve.html

 

  • Magic Conference: Treating Cushing’s Disease with Surgery: Ways of Achieving a Cure

Dr. McCutcheon will discuss the ways of treating Cushing’s disease from the surgical perspective, including the different ways of getting to the pituitary, the chances of success, and the potential complications. In addition, special nuances and pitfalls ofsurgery in Cushing’s (as opposed to other types of pituitary tumor) will be addressed.

http://cushingshelp.blogspot.com/2012/07/magic-conference-treating-cushings.html

 

  • Phil and the Zebra Undies

Dr. McCutcheon is a surprise participant in a gift to Phil.

http://cushingshelp.blogspot.com/2012/07/phil-and-zebra-undies.html

 

  • Real Talk: Psychological Process of Illness, part 1

This Segment will be broken into two sections. Part I will be provide an open opportunity for participants to ask relevant questions around the emotional/mental issues in living with a chronic illness. Participants will be able to openly talk about depression, anxiety, trauma, and other processes that occur when living illness.

 

Due to confidentiality issues, most of this segment is not shared.

http://cushingshelp.blogspot.com/2012/07/real-talk-psychological-process-of.html

 

  • Real Talk: Psychological Process of Illness, part 2

Part II will focus on seeing ourselves as survivors of illness and the process of staying empowered through illness that impacts us in such a powerful way. Principles of empowerment and how one can turn adversity into opportunity will be discussed. This segment should create an environment that is non judgmental and motivating.

 

Due to confidentiality issues, most of this segment is not shared.

http://cushingshelp.blogspot.com/2012/07/real-talk-psychological-process-of_21.html

 

  • The Rest Of The Trip

Wind-up and heading home

http://cushingshelp.blogspot.com/2012/07/the-rest-of-trip.html

Eventually, all these posts will be edited, cleaned up and typos corrected.;

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Have You Learned About Cushing’s At a Health Fair?

Posted on May 16, 2012 by MaryO

I cannot imagine this myself, since Cushing’s is so hard to diagnose but an article at yourdailyjournal.com claims: 

The blood profiles provide a comprehensive look at several physiological systems in the body at a cost that is very reasonable for the patients, all in one panel,” Laboratory Manager Rhonda Outlaw said. “The cost savings would amount to anywhere from $185 to $1,100, depending on the tests done and whether they were drawn at a physician’s office or on an outpatient basis.

 

“The panel itself will give indication of possible problems with kidney functions, hematological functions, like anemia, platelet function and infection; cardiovascular disease, thyroid functions, diabetes detection, liver functions and electrolyte function, like Cushings Syndrome, potassium regulation and dehydration detection.”

What do you think about this?


 

 

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A New Blogging Challenge

Posted on May 16, 2012 by MaryO
Blog

If any other Cushie bloggers are interested in this challenge, let me know and I’ll promote your blog on http://www.cushie-blogger.blogspot.com/

Attention bloggers! WEGO Health has found another writing challenge in honor of National Women’s Health Week, The Fitness & Health Bloggers Conference (the same one that one of our Health Activists will be attending!) is hosting a week long blogger challenge in honor of National Women’s Health Week. The theme for National Women’s Health Week is “It’s Your Time” National Women’s Health Week empowers women to make their health a top priority. It also encourages women to take the following steps to improve their physical and mental health and lower their risks of certain diseases.

Filed under: Cushing's, pituitary, Rare Diseases | Tagged: , , , , | Leave a comment »

Questions about Korlym?

Posted on May 2, 2012 by MaryO

Corcept is providing a nurse to help with insurance and other topics.

If you want a person to talk with her contact info is:

Kate Tully, R.N., B.S.N.
(650) 688-2804
ktully@corcept.com

Cushing’s Patient Advocate
Corcept Therapeutics
149 Commonwealth Drive
Menlo Park, CA 94025

More information about Korlym at http://www.korlym.com

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Cushing’s Disease and Idiopathic Intracranial Hypertension

Posted on May 2, 2012 by MaryO

Gabriel Zada, Amir Tirosh, Ursula B. Kaiser, Edward R. Laws and Whitney W. Woodmansee

Department of Neurosurgery (G.Z., E.R.L.) and Division of Endocrinology, Diabetes, and Hypertension (A.T., U.B.K., W.W.W.), Brigham and Women’s Hospital, Harvard Medical School, Boston, Massachusetts 02115

Address all correspondence and requests for reprints to: Gabriel Zada, M.D., 15 Francis Street, PBB3, Boston, Massachusetts 02115. E-mail: gzada@usc.edu.

Abstract

Case Illustration: A 33-yr-old woman with Cushing’s disease underwent successful surgical resection of a pituitary adenoma and developed IIH 11 months later after inadvertent withdrawal of oral glucocorticoids.

Methods: A review of the literature was conducted to identify previous studies pertaining to IIH in association with neuroendocrine disease, focusing on reports related to HPA axis dysfunction.

Results: A number of patients developing IIH due to a relative deficiency in glucocorticoids, after surgical or medical management for Cushing’s disease, withdrawal from glucocorticoid replacement, or as an initial presentation of Addison’s disease, have been reported. Hypotheses regarding the underlying pathophysiology of IIH in this context and, in particular, the role of cortisol and its relationship to other neuroendocrine and inflammatory mediators that may regulate the homeostasis of cerebrospinal fluid production and absorption are reviewed.

Conclusion: In a subset of patients, dysfunction of the HPA axis appears to play a role in the development of IIH. Hormonal control of cerebrospinal fluid production and absorption may be regulated by inflammatory mediators and the enzyme 11ß-hydroxysteroid dehydrogenase type 1. Further study of neuroendocrine markers in the serum and cerebrospinal fluid may be an avenue for further research in IIH.

Read the entire article at http://jcem.endojournals.org/content/95/11/4850.full

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