Day 1: Cushing’s Awareness Challenge 2015

April is always Cushing’s Awareness Challenge month because Dr. Harvey Cushing was born on the 8th.

30-posts

 

Thanks to Robin for this wonderful past logo!  I’ve participated in these 30 days for Cushing’s Awareness several times so I’m not quite sure what is left to say this year but I always want to get the word out when I can.

As I see it, there have been some strides the diagnosis or treatment of Cushing’s since last year.  More drug companies are getting involved, more doctors seem to be willing to test, a bit more awareness, maybe.

This year’s logo, also thanks to Robin:

cushie-blogger-2015-large


 

April Fool's Day

How fitting that this challenge should begin on April Fool’s Day.  So much of Cushing’s  Syndrome/Disease makes us Cushies seem like we’re the April Fool.  Maybe, just maybe, it’s the doctors who are the April Fools…

Doctors tell us Cushing’s is too rare – you couldn’t possibly have it.  April Fools!

All you have to do is exercise and diet.  You’ll feel better.  April Fools!

Those bruises on your legs?  You’re just clumsy. April Fools!

Sorry you’re growing all that hair on your chin.  That happens as you age, you know.  April Fools!

Did you say you sleep all day?  You’re just lazy.  If you exercised more, you’d have more energy. April Fools!

You don’t have stretch marks.  April Fools!

You have stretch marks but they are the wrong [color/length/direction] April Fools!

The hump on the back of your neck is from your poor posture. April Fools!

Your MRI didn’t show a tumor.  You couldn’t have Cushing’s. April Fools!

This is all in your mind.  Take this prescription for antidepressants and go home.  April Fools!

If you have this one surgery, your life will get back to normal within a few months. April Fools!

What?  You had transsphenoidal surgery for Cushing’s?  You wasted your time and money. April Fools!

I am the doctor.  I know everything.  Do not try to find out any information online. You could not have Cushing’s.  It’s too rare…  April FOOL!

All this reminds me of a wonderful video a message board member posted a while ago:

It’s Literally Impossible to Have Cushing’s

 

So now – who is the April Fool?  It wasn’t me.  Don’t let it be you, either!

 

 

 

 

Other Diseases

forums

Many of the people who post on the message boards suffer from other diseases, as well as Cushing’s. These links help to provide some information about these diseases.

~A ~

Acanthosis nigricans
This Topic on the Message Boards.

Acromegaly
This Topic on the Message Boards.

Addison’s Disease
This Topic on the Message Boards.

Adrenoleukodystrophy
This Topic on the Message Boards.


~B ~

Barrett’s esophagus


~C ~

Carney Complex
This Topic on the Message Boards.
New Support Group for Carney Complex.

Central Serous Retinopathy
This Topic on the Message Boards.

Congenital Adrenal Hyperplasia (CAH)
This Topic on the Message Boards.

Conn’s Syndrome
This Topic on the Message Boards.

Craniopharyngioma
This Topic on the Message Boards.


~D ~

Diabetes insipidus
This Topic on the Message Boards.


~E ~

Ectopic ACTH Syndrome
This Topic on the Message Boards.

Empty Sella
This Topic on the Message Boards.


~F ~

Fibromyalgia
This Topic on the Message Boards.


~G ~

Gigantism
This Topic on the Message Boards.


~H ~

Hirsuitism
This Topic on the Message Boards.

Hyperprolactinemia
This Topic on the Message Boards.

Hyperthyroidism
This Topic on the Message Boards.

Hypoalderostonism
This Topic on the Message Boards.

Hypocalcemia
This Topic on the Message Boards

Hypopituitarism
This Topic on the Message Boards.

Hypothyroidism
This Topic on the Message Boards.


~I ~

Insulin Resistance
This Topic on the Message Boards.


~K ~

Kidney Disease
This Topic on the Message Boards.


~L ~

Lyme Disease
This Topic on the Message Boards.


~M ~

Madelung’s Disease
This Topic on the Message Boards.

Menopause
This Topic on the Message Boards.

MEN Type 1
This Topic on the Message Boards.

Myasthenia Gravis
This Topic on the Message Boards.


~N ~

Nelson’s Syndrome
This Topic on the Message Boards.


~O ~

Osteopenia
This Topic on the Message Boards.

Osteoporosis
This Topic on the Message Boards.


~P ~

Panhypopituitarism
This Topic on the Message Boards.

PCOS
This Topic on the Message Boards.

Perimenopause
This Topic on the Message Boards.

Pheochromocytoma
This Topic on the Message Boards.

Pituitary dwarfism
This Topic on the Message Boards.

Premature menopause
This Topic on the Message Boards.

Primary pigmented nodular adrenocortical disease (PPNAD)
This topic on the Message Boards

Prolactinoma
This Topic on the Message Boards.

Pseudo Cushing’s
This Topic on the Message Boards


~R ~

Rathke’s cleft cyst
This Topic on the Message Boards.

ROHHAD (Rapid-Onset Obesity With Hypothalamic Dysfunction, Hypoventilation, and Autonomic Dysregulation Presenting in Childhood)
This Topic on the Message Boards


~S ~

Sheehan’s Syndrome
This Topic on the Message Boards.

Stein-Leventhal Syndrome
This Topic on the Message Boards.


~T ~

Thymoma
This Topic on the Message Boards.

Thyroid Gland Disorders
This Topic on the Message Boards.

Turner’s Syndrome
This Topic on the Message Boards.


~V ~

Von Hippel-Lindau disease
This Topic on the Message Boards.


~Z ~

Zollinger-Ellison Syndrome

What Causes Overweight and Obesity?

Health Conditions

Some hormone problems may cause overweight and obesity, such as underactive thyroid (hypothyroidism), Cushing’s syndrome, and polycystic ovarian syndrome (PCOS).

Underactive thyroid is a condition in which the thyroid gland doesn’t make enough thyroid hormone. Lack of thyroid hormone will slow down your metabolism and cause weight gain. You’ll also feel tired and weak.

Cushing’s syndrome is a condition in which the body’s adrenal glands make too much of the hormone cortisol. Cushing’s syndrome also can develop if a person takes high doses of certain medicines, such as prednisone, for long periods.

People who have Cushing’s syndrome gain weight, have upper-body obesity, a rounded face, fat around the neck, and thin arms and legs.

PCOS is a condition that affects about 5–10 percent of women of childbearing age. Women who have PCOS often are obese, have excess hair growth, and have reproductive problems and other health issues. These problems are caused by high levels of hormones called androgens.

Read the entire article at http://www.nhlbi.nih.gov/health/health-topics/topics/obe/causes

Cushing’s Awareness Challenge, Day 3: Symptoms

robin-symptoms

 

Robin has made another excellent graphic of some of the symptoms of Cushing’s.  There are far too many to be listed in any image, as shown by the list at http://www.cushings-help.com/toc.htm#symptoms

 

Just to be silly, a few years ago, I did my own version of Cushing’s symptoms:

 

The Seven Dwarves of Cushing's

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.

 

From http://www.jsonline.com/sponsoredarticles/health-wellness/what-would-harvey-cushing-say-about-cushings-disease-today8087390508-253383751.html

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