Saturday, December 13, 2014

Myth: After a “cure” for Cushing’s, everyone heals and goes back to normal.

Myth: After a “cure” for Cushing’s, everyone heals and goes back to normal. All Cushing’s patients can easily heal with no repercussions after Cushing’s. After pituitary surgery or a Bilateral Adrenalectomy (BLA), life is great and being “cured” means having a “normal” life! After all, surgery is a “cure” and about 6 weeks later, you are back to normal. “Say, you had surgery XYZ long ago! Shouldn’t you be better by now?!!!!”


Fact: I can not even tell you how many people asked me “aren’t you better yet?!” after both of my surgeries! There are too many to count! There is a misperception that surgery means a cure and therefore, healing should happen magically and quickly. No! No! No! This is far from the truth.


The sad reality is that even some medical doctors buy into this myth and expect quick healing in their patients. However, they are not living in their patients bodies nor have they obviously read the extensive research on this. Research has shown that the healing process after surgery is a long and extensive one. One endocrinologist, expert from Northwestern, even referred to the first year after pituitary surgery for patients as “the year from hell”! He literally quoted that on a slide presentation.


It takes at least one year after pituitary surgery, for instance, to even manage hormones effectively. Surgery is invasive and hard. However, the hardest part comes AFTER surgery. This is when the body is compensating for all of the years of hormonal dysregulation and the patient is trying to get his/her levels back to normal.


There is a higher rate of recurrence of Cushing’s then we once thought. This means that after a patient has achieved remission from this illness, it is likely to come back. In these cases, a patient faces other treatments that may include radiation, the same type of surgery, or an alternative surgery.


For many pituitary patients who experience multiple recurrences, the last resort is to attack the source by removing both adrenal glands. This procedure is known as a Bilateral Adrenalectomy or BLA. In these cases, it is said that the patient “trades one disease for another”, now becoming adrenally insufficient and having Addison’s Disease. Both Pituitary and Adrenal patients are faced with a lifetime of either Secondary or Primary Adrenal Insufficiency.


Adrenal Insufficiency is also life threatening and adrenal crises can potentially lead to death. Additionally, research says that BLA patients take, on average, 3-5 years for their bodies to readjust and get anywhere near “normal”. Most patients will tell you that they never feel “normal” again!


Think of these facts the next time you feel tempted to ask your friend, family, or loved one, “why is it taking so long to get better after surgery?”. Remember that in addition to the aforementioned points; problems from Cushing’s can linger for years after surgery! One Cushing’s patient stated, “I’m 5 years post-op and I STILL have problems!” This mirrors the sentiments of many of us in the Cushing’s community. Please be conscious of this when supporting your loved one after treatment.


You can find more information in the following links:


http://ift.tt/1snDOl4


http://ift.tt/12J75dE


http://ift.tt/1snDOBo


This is another article that validates the aforementioned fact about the “cure myth”: http://ift.tt/12J735B




Thursday, December 11, 2014

Mutations Drive Unrestrained Secretion

Myth: “All types of Cushing’s are the same”

Myth: “All types of Cushing’s are the same”


Fact: In the words of our dear friend and advocate, Robin Ess, “There are many genetic varieties with quite a few discovered in the past couple of years. Plus, there are several types such as adrenal, ectopic, and pituitary. And so on”….Amazingly, some doctors do not realize that there are different varieties of Cushing’s and that the symptoms can come from a different source.


For instance, a doctor might rule out a pituitary tumor and completely dismiss the patient, even with biochemical evidence of Cushing’s. That doctor, instead of dismissing the patient, should thoroughly look for other potential sources, such as an adrenal tumor, or yet another source. Did you know that tumors on one’s lungs can even cause Cushing’s? Most people don’t know that.


For more information about the different types of Cushing’s, please read: http://ift.tt/1Gh6Wgj


Another great article regarding ectopic Cushing’s can be found here: http://ift.tt/1yCFOYh


MaryONote: Folks might be interested in listening to this podcast episode with Jayne, a Cushing’s patient who had pituitary surgeries and a bilateral adrenalectomy before finding the true source of her ectopic Cushing’s – lung tumors.


http://ift.tt/1yCFQiB




Wednesday, December 10, 2014

Cushings Syndrome/Disease can be healed or cured through change in diet or exercise

Myth: Cushing’s Syndrome/Disease can be healed or cured through change in diet or exercise.


myth-busted


Fact: NO! Caloric intake or lack of exercise has NO impact on weight gain and/ or loss in persons with Cushing’s.


Saying that someone “cheated” on their diet may seem reasonable to some as a reason for weight gain but I assure you that a candy bar or a piece of pie does not make a person with Cushing’s gain weight or get sick. Excess cortisol is the reason for Cushing’s symptoms. Treating the disease is the only way to alleviate symptoms.


The first line of treatment with the highest rate of remission is currently surgery to remove the tumor (s) from the pituitary, adrenal gland, or ectopic source.




Monday, December 8, 2014

Myth: YOU are the problem and the reason for your cortisol levels…

Myth: YOU are the problem and the reason for your cortisol levels. Having issues with too much or too little cortisol, the stress hormone, means that YOU are stressing too much or are too anxious. “YOU could control your levels if you would JUST calm down!”


Fact: YOU are NOT the problem! The dysfunction in your body is the problem. It is true that cortisol is your stress hormone or fight or flight hormone. This hormone helps your body compensate for and deal with trauma or stress, both physical and emotional. So, yes, your body does have a reaction to stress.

However, for people with Cushing’s, that hormone goes haywire. Too much cortisol leads to Cushing’s symptoms and having too little cortisol leads to Adrenal Insufficiency. Normally, our bodies’ response to stress is to pump out 10X the amount of your baseline cortisol to cope. If it is not able to do this, it will go into shock and can lead to death unless the emergency protocol is followed with an emergency injection of steroid. No amount of coping skills can “control” one’s physiological response to stress.



Friday, December 5, 2014

#1 ~ Cushing’s Myths and Facts

Myth: “Cushing’s is RARE”, “No one has Cushing’s!”, “It is literally impossible for you to have Cushing’s Disease!”


myth-busted


Fact: We have all been guilty of referring to Cushing’s as a “Rare” disease. I*, myself, say this all the time. In fact, the statistics state that only about 2 in every million people are afflicted with this disease. However, these are documented cases.


In reality, Cushing’s is not as rare as we once thought. The fact is that Cushing’s is just rarely diagnosed! Non experts tend to not test accurately and adequately for Cushing’s.


With an inappropriate protocol for testing, the prevalence of accurate diagnoses decreases. Cushing’s experts DO understand how extensive and difficult the diagnostic process is, so they tend to be more deliberate and thorough when exploring possible Cushing’s in their patients. Cushing’s patients who cycle also have to be more persistent in asking for adequate testing so that they are appropriately diagnosed.


The following video is an accurate portrayal of what many patients experience when trying to get help for their symptoms:



Please review the following links:

http://ift.tt/1q1KRhU

http://ift.tt/1tRjDGY


* Dr. Karen Ternier Thames




Saturday, November 15, 2014

Research Study: An Open Label Study to Assess the Safety and Efficacy of COR-003 (2S, 4R-ketoconazole) in the Treatment of Endogenous Cushing’s Syndrome

Objectives:         
The purpose of this study is to test the effects of different doses of COR-003 on people with Cushing’s syndrome (CS) primarily by measuring the cortisol levels in urine and secondarily by measuring other health parameters such as blood pressure, weight, and liver function. This study is also being conducted to see if there is any harm caused when using COR-003.
This study is an open label study. That means both the health providers and the participants in the study are aware of the drug or treatment being given.
Eligibility:
Adult Subjects (18 years or older) with elevated levels of cortisol due to endogenous CS.
Confirmed diagnosis of persistent or recurrent CS (with or without therapy) or newly diagnosed disease, if subjects are not candidates for surgery. CS will be defined according to the criteria in the guidelines for diagnosis of CS (Nieman 2008).
Women who are pregnant or lactating are not eligible for this study.
Individuals with other health conditions or diagnoses may not be eligible for this study.
These and other eligibility criteria are best reviewed with a doctor who is participating in the study. You can also get more detailed eligibility information about the study by clicking here to visithttp://www.clinicaltrials.gov.
Study Design:
  • The study will begin with a screening period to make sure subjects are eligible to participate in the study.
  • After the screening period, subjects who are eligible for participation will each be given several different doses of COR-003, to be taken orally in tablet form.
  • After an individualized dose has been selected, participants will take COR-003 for six months.
  • Finally, participants will continue in the study for an additional six months at doses to be determined by the study doctor.

Throughout the study, participants will meet regularly with a study doctor and will take part in a variety of medical tests to make sure they are doing well and to see if COR-003 is working.
Participants in the study should be sure they have the time to participate. Participants will generally be followed for over a year:
Study Locations
The study is currently taking place in several places around the world (United States, Belgium, France, Israel, Netherlands, Spain, and Sweden).
Additional information on the study can be found at clinicaltrials.gov throughthis link.
Study sponsor: Cortendo AB
For more information, please contact:
Jim Ellis at Cortendo AB tel: +1 (610) 254-9245 or jellis@cortendo.com

Thursday, November 13, 2014

Pituitary ACTH Hypersecretion (Cushing’s Disease) – Pipeline Review, H2 2014

Global Markets Direct’s, ‘Pituitary ACTH Hypersecretion (Cushing’s Disease) – Pipeline Review, H2 2014′, provides an overview of the Pituitary ACTH Hypersecretion (Cushing’s Disease)’s therapeutic pipeline.


This report provides comprehensive information on the therapeutic development for Pituitary ACTH Hypersecretion (Cushing’s Disease), complete with comparative analysis at various stages, therapeutics assessment by drug target, mechanism of action (MoA), route of administration (RoA) and molecule type, along with latest updates, and featured news and press releases. It also reviews key players involved in the therapeutic development for Pituitary ACTH Hypersecretion (Cushing’s Disease) and special features on late-stage and discontinued projects.


Global Markets Direct’s report features investigational drugs from across globe covering over 20 therapy areas and nearly 3,000 indications. The report is built using data and information sourced from Global Markets Direct’s proprietary databases, Company/University websites, SEC filings, investor presentations and featured press releases from company/university sites and industry-specific third party sources, put together by Global Markets Direct’s team. Drug profiles/records featured in the report undergoes periodic updation following a stringent set of processes that ensures that all the profiles are updated with the latest set of information. Additionally, processes including live news & deals tracking, browser based alert-box and clinical trials registries tracking ensure that the most recent developments are captured on a real time basis.


The report enhances decision making capabilities and help to create effective counter strategies to gain competitive advantage. It strengthens R&D pipelines by identifying new targets and MOAs to produce first-in-class and best-in-class products.


Note*: Certain sections in the report may be removed or altered based on the availability and relevance of data for the indicated disease.


Scope


- The report provides a snapshot of the global therapeutic landscape of Pituitary ACTH Hypersecretion (Cushing’s Disease)

– The report reviews key pipeline products under drug profile section which includes, product description, MoA and R&D brief, licensing and collaboration details & other developmental activities

– The report reviews key players involved in the therapeutics development for Pituitary ACTH Hypersecretion (Cushing’s Disease) and enlists all their major and minor projects

– The report summarizes all the dormant and discontinued pipeline projects

– A review of the Pituitary ACTH Hypersecretion (Cushing’s Disease) products under development by companies and universities/research institutes based on information derived from company and industry-specific sources

– Pipeline products coverage based on various stages of development ranging from pre-registration till discovery and undisclosed stages

– A detailed assessment of monotherapy and combination therapy pipeline projects

– Coverage of the Pituitary ACTH Hypersecretion (Cushing’s Disease) pipeline on the basis of target, MoA, route of administration and molecule type

– Latest news and deals relating related to pipeline products


Reasons to buy


- Provides strategically significant competitor information, analysis, and insights to formulate effective R&D development strategies

– Identify emerging players with potentially strong product portfolio and create effective counter-strategies to gain competitive advantage

– Develop strategic initiatives by understanding the focus areas of leading companies

– Identify and understand important and diverse types of therapeutics under development for Pituitary ACTH Hypersecretion (Cushing’s Disease)

– Plan mergers and acquisitions effectively by identifying key players of the most promising pipeline

– Devise corrective measures for pipeline projects by understanding Pituitary ACTH Hypersecretion (Cushing’s Disease) pipeline depth and focus of Indication therapeutics

– Develop and design in-licensing and out-licensing strategies by identifying prospective partners with the most attractive projects to enhance and expand business potential and scope

– Modify the therapeutic portfolio by identifying discontinued projects and understanding the factors that drove them from pipeline


Read the full report: http://ift.tt/14hYcJg




Monday, November 3, 2014

Today in Lab History

Jokichi Takamine was a Japanese-American biochemist and industrialist, born Nov. 3, 1854, who isolated the hormone produced in the adrenal gland that causes the body to respond to emergencies. This chemical was adrenalin — now called epinephrine — from the suprarenal gland. It was the first pure hormone to be isolated from natural sources.


He applied for and received a U.S. patent on the substance, and went on to make a fortune with his marketing of Adrenalin. In fact, the product that he marketed was not pure epinephrine, but a mixture of the hormone and its sibling compound, norepinephrine, or noradrenaline. It is now made synthetically. He also found takadastase, and played a key role in the introduction of phosphate fertilizer along with various other manufacturing and chemical industries to Japan.


~~~~~


How_to_give_EpiPen


Epinephrine, an EpiPen or Auvi-Q/Allerject injection, should be given in the mid-anterior lateral thigh (not the outer thigh). We call this the EpiCenter of the thigh, and this video segment from the EpiCenter Medical (http://ift.tt/1x0SllT) online anaphylaxis first aid course has a thigh location graphic to help you pinpoint the most effective location for the injection.





Wednesday, October 22, 2014

Safety of DR-HC for adrenal insufficiency

Conventional treatment of adrenal insufficiency involves cortisol replacement therapy with twice- or thrice-daily oral hydrocortisone. Recently dual-release hydrocortisone (DR-HC) administered once daily to provide high levels of cortisol during the morning, followed by a gradual decrease throughout the day is being used. This results in considerably lower cortisol exposure during the afternoon and evening compared with immediate-release thrice-daily hydrocortisone, thereby mimicking normal cortisol secretion more closely than conventional therapy.


Nilsson et al. conducted a study to evaluate the long-term safety of DR-HC and whether the difference in the incidence of adverse events persisted over time and if it was related to different levels of exposure to cortisol. They conducted a randomised, open-label, crossover trial of DR-HC or thrice-daily hydrocortisone for 3 months each (stage 1) followed by two consecutive, prospective, open-label studies of DR-HC for 6 months (stage 2) and 18 months (stage 3) at five university clinics in Sweden. The results of the study of the newly developed DR-HC showed that long-term maintenance treatment and rescue therapy was well tolerated up to 27 months of continuous treatment.


Read full article titled ‘Prospective evaluation of long-term safety of dual-release hydrocortisone replacement administered once daily in patients with adrenal insufficiency’ by Nilsson et al., European Journal of Endocrinology 171 pp 369 – 377, DOI: 10.1530/EJE-14-0327




Cushing Syndrome in Children: Growth after Surgical Cure

Cushing syndrome (CS) occurs only rarely in children, but when it does, it causes weight gain and stunting. In young children, adrenal tumors are usually the cause while in adolescents, pituitary tumors are more likely.


The September 2014 issue of Endocrine-Related Cancer examines growth patterns in 19 pediatric patients with ACTH-dependent CS (CD) and 18 patients with a form of ACTH-independent CS, micronodular adrenal hyperplasia (MAH). The researchers gathered data at the time of surgery and also followed up one year later.


Patients in the CD and the MAH groups had similar demographic characteristics, baseline heights and BMI scores before surgery. All patients experienced significant improvements in height and BMI after surgery. Patients with MAH, however, fared significantly better than those with CD and had better post-operative growth.


The researchers propose several reasons:



  • When ACTH-secreting pituitary adenoma requires extensive surgical exploration, remaining pituitary cells often lose some of their function.

  • CD patients tend to be older and have consistent and increased glucocorticoid exposure; they develop vertebral fractures more often leading to compromised skeletal and overall growth potential. MAH patients often have cyclical CS, with intermittent hypercortisolism and an overall milder CS.

  • CD patients often need a longer-than-expected course of therapy with steroids after surgery, which alters metabolism and growth.

  • CD patients have been shown to have advance bone age because of ACTH-induced metabolic changes.


The authors indicate that CS patients are often considered for growth hormone therapy once the underlying problem is corrected. They remind clinicians that MAH patients are less likely to need growth hormone. They recommend close monitoring for CD patients, and early intervention with growth hormone if growth does not meet expectation. -


See more at: http://ift.tt/1thzAJB




Webinar: Hypothalamic Pituitary Dysfunction in Young Athletes with Head Injury (THI)

Don’t miss this great opportunity.

Join us tomorrow for a free webinar!


Date: October 23, 2014

Time: 12:00 – 1:00 PM Pacific Daylight Time



Hypothalamic Pituitary Dysfunction in Young Athletes with Head Injury (THI)

Presented by: Saad Sakkal, MD, FACP, FACE, FACPE

Director, Metabolic Care Center, Mason, Ohio


Traumatic brain Injury has been recently of great attraction to researchers, retired football players, and the public. But years before it is documented clinically the Hypothalamic pituitary Dysfunction symptoms appear at much earlier age and need more vigorous attention.


We present in this webinar the early symptoms and recognition of the syndrome from clinical perspective. Describe the Hypothalamic Dysfunction in its widest picture, its relation to Fibromyalgia/Chronic fatigue, and its present therapy available .


If you are unable to attend the live webinar, we will have it available on our website starting Monday. I will post a link when it is available.


http://bit.ly/1qvUcZO





Monday, October 13, 2014

Monday, July 21, 2014

Cushing’s Help is 14 Today!

Who’d have believed it?  Today, July 21, 2014 is our 14th birthday!
It’s unbelievable but the idea for Cushing’s Help and Support arrived 14 years ago last night. I was talking with my dear friend Alice, who ran a wonderful menopause site called Power Surgewondering 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 going to make some helpful differences in someone else’s life!

The message boards are very active and we have weekly online text chats, weekly 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.
5d4c9-woohoo-scaled800

Monday, June 9, 2014

Interview with Stacy, Mom to Possible Cushing's Patient

Stacy writes in her bio
MacKenna is my daughter.  I am in desperate need of assistance regarding her weight.
She is 6 years old and weighs about 95 pounds.  At four, she was normal to underweight.

First clue – she gained 10 pounds in three months.  Of course doctor’s wanted a food log …. however, as her parent, I knew something was wrong.

So much to say, I NEED to help my baby and am hoping someone on this board can point me to a good pedi endo (I am currently on my second).  I have pictures to show the progression of her changes.  Her growth pattern is abnormal as she does not gain height while she gains weight and vice versa.

I believe it is cyclical cushings.  And if it isn’t, I still need help as this is going to kill her – her little frame cannot hold much more.

McKenna's mom will be interviewed June 11 at 6:00 pm eastern in BlogTalkRadio.  Archives will be available later in the Cushing's Podcast.

Tuesday, May 6, 2014

Interview May 7 with Kathy C, Pituitary Patient

My name is Kathy Casey. I am a 63 year old retired school nurse. I am married with two wonderful sons and a grandson. My husband and I live in the mountain town of Mt. Shasta in northern California. I have always been athletic.


In 1995, I was diagnosed with a pituitary tumor. At the time the only symptom I was aware of was a severe headache. I had a transphenoidal resection by Dr. Wilson at UCSF Medical Center followed by radiation therapy for 23 days. At the time they said they could not remove all of the tumor.


In 2008/2009. I exhibited symptoms of Cushing’s and my cortisol level was outrageous, and I had to be hospitalized initially for a potassium level of 2. I returned to UCSF and Dr. Anwar Sandeep operated . By removing part of the tumor. My Cushing symptoms resolved. However, he said that the tumor was not encapsulated and was invading the cavernous sinus and stella turcica so it was still not possible to remove it all.


I was OK until December 2013 when I began exhibiting the symptoms of Cushings. One of my 24 hr. urines was 14,000. I had to be hospitalized for a potassium level of 1.9. Dr. Heaney said he has never seen a cortisol level that high. This time I decided to go to the UCLA Pituitary Tumor and Endocrinology Program where they were more oriented to follow-up and treating this disorder. Dr. Bergsneider decided that surgery was not an option. He and Dr. Heaney decided radiation was not an option. So now I am being followed by Dr. Heaney to see if medication can help.


I am now on Cabergoline 0.5 mg three tabs twice a week and Signifor 0.9 mg subcutaneosly twice a day. I think they are alleviating some of the symptoms. However, the Signifor caused my blood sugar to rise, and I had to go on Metformin which is causing nausea to a point where I have a hard time eating.


Anyway, this whole situation is depressing and overwhelming. I am tryng to stay positive, but I wonder how it will turn out. I am fortunate to have a supportive and helpful husband.


I am interested in communicating with people who may be going through a similar experience and learning more about this rare condition.


Kathy will be interviewed May 7, 2014 in BlogTalkRadio


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Friday, May 2, 2014

Cushing’s Awareness Challenge 17

robin-causes


Another of Robin’s wonderful images.


A similar image from the CushieWiki


cushings-causes


No wonder Cushing’s is so hard to diagnose!


maryo colorful zebra




Wednesday, April 30, 2014

Interview May 7 with Kathy C, Pituitary Patient

My name is Kathy Casey. I am a 63 year old retired school nurse. I am married with two wonderful sons and a grandson. My husband and I live in the mountain town of Mt. Shasta in northern California. I have always been athletic.

In 1995, I was diagnosed with a pituitary tumor. At the time the only symptom I was aware of was a severe headache. I had a transphenoidal resection by Dr. Wilson at UCSF Medical Center followed by radiation therapy for 23 days. At the time they said they could not remove all of the tumor.

In 2008/2009. I exhibited symptoms of Cushing’s and my cortisol level was outrageous, and I had to be hospitalized initially for a potassium level of 2. I returned to UCSF and Dr. Anwar Sandeep operated . By removing part of the tumor. My Cushing symptoms resolved. However, he said that the tumor was not encapsulated and was invading the cavernous sinus and stella turcica so it was still not possible to remove it all.

I was OK until December 2013 when I began exhibiting the symptoms of Cushings. One of my 24 hr. urines was 14,000. I had to be hospitalized for a potassium level of 1.9. Dr. Heaney said he has never seen a cortisol level that high. This time I decided to go to the UCLA Pituitary Tumor and Endocrinology Program where they were more oriented to follow-up and treating this disorder. Dr. Bergsneider decided that surgery was not an option. He and Dr. Heaney decided radiation was not an option. So now I am being followed by Dr. Heaney to see if medication can help.

I am now on Cabergoline 0.5 mg three tabs twice a week and Signifor 0.9 mg subcutaneosly twice a day. I think they are alleviating some of the symptoms. However, the Signifor caused my blood sugar to rise, and I had to go on Metformin which is causing nausea to a point where I have a hard time eating.
Anyway, this whole situation is depressing and overwhelming. I am tryng to stay positive, but I wonder how it will turn out. I am fortunate to have a supportive and helpful husband.

I am interested in communicating with people who may be going through a similar experience and learning more about this rare condition.
Kathy will be interviewed May 7, 2014 in BlogTalkRadio

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Tuesday, April 8, 2014

Cushing's Awareness Day 2014

It’s Here!

Dr. Cushing was born in Cleveland Ohio. The fourth generation in his family to become a physician, he showed great promise at Harvard Medical School and in his residency at Johns Hopkins Hospital (1896 to 1900), where he learned cerebral surgery under William S. Halsted.

After studying a year in Europe, he introduced the blood pressure sphygmomanometer to the U.S.A. He began a surgical practice in Baltimore while teaching at Johns Hopkins Hospital (1901 to 1911), and gained a national reputation for operations such as the removal of brain tumors. From 1912 until 1932 he was a professor of surgery at Harvard Medical School and surgeon in chief at Peter Bent Brigham Hospital in Boston, with time off during World War I to perform surgery for the U.S. forces in France; out of this experience came his major paper on wartime brain injuries (1918). In addition to his pioneering work in performing and teaching brain surgery, he was the reigning expert on the pituitary gland since his 1912 publication on the subject; later he discovered the condition of the pituitary now known as “Cushing’s disease“.


Today, April 8th, is Cushing’s Awareness Day. Please wear your Cushing’s ribbons, t-shirts, awareness bracelets or Cushing’s colors (blue and yellow) and hand out Robin’s wonderful Awareness Cards to get a discussion going with anyone who will listen.

And don’t just raise awareness on April 8.  Any day is a good day to raise awareness.

robin-harvey


MaryO

Friday, April 4, 2014

What would Harvey Cushing say about Cushing’s disease today?

harvey-book

(BPT) - More than 80 years ago renowned neurosurgeon, Dr. Harvey Cushing, discovered a tumor on the pituitary gland as the cause of a serious, hormone disorder that leads to dramatic physical changes in the body in addition to life-threatening health concerns. The discovery was so profound it came to be known as Cushing’s disease. While much has been learned about Cushing’s disease since the 1930s, awareness of this rare pituitary condition is still low and people often struggle for years before finding the right diagnosis.

Read on to meet the man behind the discovery and get his perspective on the present state of Cushing’s disease.

What would Harvey Cushing say about the time it takes for people with Cushing’s disease to receive an accurate diagnosis?

Cushing’s disease still takes too long to diagnose!

Despite advances in modern technology, the time to diagnosis for a person with Cushing’s disease is on average six years. This is partly due to the fact that symptoms, which may include facial rounding, thin skin and easy bruising, excess body and facial hair and central obesity, can be easily mistaken for other conditions. Further awareness of the disease is needed as early diagnosis has the potential to lead to a more favorable outcome for people with the condition.

* What would Harvey Cushing say about the advances made in how the disease is diagnosed?

Significant progress has been made as several options are now available for physicians to use in diagnosing Cushing’s disease.

In addition to routine blood work and urine testing, health care professionals are now also able to test for biochemical markers - molecules that are found in certain parts of the body including blood and urine and can help to identify the presence of a disease or condition.

* What would Harvey Cushing say about disease management for those with Cushing’s disease today?

Patients now have choices but more research is still needed.

There are a variety of disease management options for those living with Cushing’s disease today. The first line and most common management approach for Cushing’s disease is the surgical removal of the tumor. However, there are other management options, such as medication and radiation that may be considered for patients when surgery is not appropriate or effective.

* What would Harvey Cushing say about the importance of ongoing monitoring in patients with Cushing’s disease?

Routine check-ups and ongoing monitoring are key to successfully managing Cushing’s disease.
The same tests used in diagnosing Cushing’s disease, along with imaging tests and clinical suspicion, are used to assess patients’ hormone levels and monitor for signs and symptoms of a relapse. Unfortunately, more than a third of patients experience a relapse in the condition so even patients who have been surgically treated require careful long-term follow up.

* What would Harvey Cushing say about Cushing’s disease patient care?

Cushing’s disease is complex and the best approach for patients is a multidisciplinary team of health care professionals working together guiding patient care.

Whereas years ago patients may have only worked with a neurosurgeon, today patients are typically treated by a variety of health care professionals including endocrinologists, neurologists, radiologists, mental health professionals and nurses. We are much more aware of the psychosocial impact of Cushing’s disease and patients now have access to mental health professionals, literature, patient advocacy groups and support groups to help them manage the emotional aspects of the disease.

Learn More
Novartis is committed to helping transform the care of rare pituitary conditions and bringing meaningful solutions to people living with Cushing’s disease. Recognizing the need for increased awareness, Novartis developed the “What Would Harvey Cushing Say?” educational initiative that provides hypothetical responses from Dr. Cushing about various aspects of Cushing’s disease management based on the Endocrine Society’s Clinical Guidelines.

For more information about Cushing’s disease, visit www.CushingsDisease.com or watch educational Cushing’s disease videos on the Novartis YouTube channel at www.youtube.com/Novartis.

Wednesday, February 5, 2014

Dr Friedman: Meeting on Thyroid and Hormonal Problems

friedman


Dr. Theodore Friedman will host a free meeting on thyroid and hormonal problems on Sunday February 16 from 7-8 PM PST at Anshe Emes synagogue-1490 S. Robertson Blvd., Los Angeles, CA 90035.


The meeting will be videoconferenced to those who cannot make it in person.


To sign up for the videoconference, email mail@goodhormonehealth.com by February 14.




Tuesday, December 31, 2013

Cushing’s Awareness Patient Day

Saturday, February 1st, 2014

San Francisco, California

Hosted by Kate Tully, R.N. and Katherine Waidner, R.N.
Cushing’s Patient Advocates – Corcept Therapeutics

Agenda and details to follow

The day will focus on endogenous Cushing’s, a condition caused by high cortisol in your body.

The day will not cover exogenous Cushing’s caused by steroids taken for various health conditions including asthma, arthritis or lupus.

Cushing’s Awareness Patient Day

Saturday, February 1st, 2014


San Francisco, California


Hosted by Kate Tully, R.N. and Katherine Waidner, R.N.


Cushing’s Patient Advocates – Corcept Therapeutics


Agenda and details to follow


The day will focus on endogenous Cushing’s, a condition caused by high cortisol in your body.


The day will not cover exogenous Cushing’s caused by steroids taken for various health conditions including asthma, arthritis or lupus.




Wednesday, December 4, 2013

Tonight! Interview with Miriam K (Meeks089), Pituitary Success Story

Miriam writes in her bio:
"I suffered for eight long years with Cushings disease . I had surgery on August 1 , 2012 , I look like a different person , and act like a different person. I would love to share my journy . One that was an emotional roller coaster .
It was a long hellish journey .However I would not trade it for anything else in the world.
Although I suffered immensly, Cushings has made me who I am today. I have become strong from this disease. Although I suffered many symptoms, the emotional ones were by far the worst.
I would love to be interveiwed because I vowed when I was ill to help people when I got better.
I want to give people hope ."
MaryONote:  Miriam will be interviewed on BlogTalkRadio podcasts December 4, 2013 at 6:00PM Eastern.
If you want to ask Miriam a question, please use the call-in number: (646) 200-0162
Archives will be available at Cushings-Help on BlogTalkRadio a few hours after the conclusion of this interview.