Cushing's Awareness Challenge, 2015

The Cushing's Awareness Challenge is almost upon us again!

Do you blog? Want to get started?

Since April 8 is Cushing's Awareness Day, several people got their heads together to create the Fourth Annual Cushing's Awareness Blogging Challenge.

All you have to do is blog about something Cushing's related for the 30 days of April.

There will also be a logo for your blog to show show you've participated.

Please let me know the URL to your blog in the comments area of this post or an email and I will list it on CushieBloggers ( http://cushie-blogger.blogspot.com/)

The more people who participate, the more the word will get out about Cushing's.

Suggested topics - or add your own!

• In what ways have Cushing's made you a better person?
• What have you learned about the medical community since you have become sick?
• If you had one chance to speak to an endocrinologist association meeting, what would you tell them about Cushing's patients?
• What would you tell the friends and family of another Cushing's patient in order to garner more emotional support for your friend? challenge with Cushing's? How have you overcome challenges? Stuff like that.
• I have Cushing's Disease....(personal synopsis)
• How I found out I have Cushing's
• What is Cushing's Disease/Syndrome? (Personal variation, i.e. adrenal or pituitary or ectopic, etc.)
• My challenges with Cushing's
• Overcoming challenges with Cushing's (could include any challenges)
• If I could speak to an endocrinologist organization, I would tell them....
• What would I tell others trying to be diagnosed?
• What would I tell families of those who are sick with Cushing's?
• Treatments I've gone through to try to be cured/treatments I may have to go through to be cured.
• What will happen if I'm not cured?
• I write about my health because…
• 10 Things I Couldn’t Live Without.
• My Dream Day.
• What I learned the hard way
• Miracle Cure. (Write a news-style article on a miracle cure. What’s the cure? How do you get the cure? Be sure to include a disclaimer)
• Health Madlib Poem. Go to : http://languageisavirus.com/cgi-bin/madlibs.pl#.VPGZQlPF9A8 and fill in the parts of speech and the site will generate a poem for you.
• The Things We Forget. Visit http://thingsweforget.blogspot.com/ and make your own version of a short memo reminder. Where would you post it?
• Give yourself, your condition, or your health focus a mascot. Is it a real person? Fictional? Mythical being? Describe them. Bonus points if you provide a visual!
• 5 Challenges & 5 Small Victories.
• The First Time I…
• Make a word cloud or tree with a list of words that come to mind when you think about your blog, health, or interests. Use a thesaurus to make it branch more.
• How much money have you spent on Cushing's, or, How did Cushing's impact your life financially?
• Why do you think Cushing's may not be as rare as doctors believe?
• What is your theory about what causes Cushing's?
• How has Cushing's altered the trajectory of your life? What would you have done? Who would you have been
• What three things has Cushing's stolen from you? What do you miss the most? What can you do in your Cushing's life to still achieve any of those goals?
• What new goals did Cushing's bring to you?
• How do you cope?
• What do you do to improve your quality of life as you fight Cushing's?
• How Cushing's affects children and their families
• Your thoughts...?

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

(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

Enzyme linked to obesity

Researchers find that increased levels of an enzyme in fat cells lead to dangerous levels of abdominal obesity.

Previous studies have shown that the stress hormone cortisol can lead to an accumulation of fat round the abdomen. For instance, people with Cushing’s disease – where there’s excess cortisol in the blood – have too much abdominal fat. It’s bad for health to have fat in this area – it’s linked to diabetes and heart disease. That’s why it’s healthier to be a ‘pear shape’ rather than an ‘apple shape’. The distribution of fat in your body really does matter.

Researchers in Scotland and the US have now focussed upon an enzyme that produces cortisol to see what effect it has on abdominal fat. Working on mice genetically-modified to produce the enzyme – and therefore cortisol – in fat cells, they find that even a small increase in levels produces dramatic effects. The mice, compared with normal animals, gained fat in the abdominal area even on a low fat diet. They developed diabetes, high blood pressure, and also tended to eat more. It opens up the possibility of further studies on human obesity, and also perhaps could lead to therapies that block this enzyme and so reduce fat accumulation.

From http://www.tele-management.ca/2013/09/enzyme-linked-to-obesity/

ShineOut, an Information and Support Program for Cushing's Disease

ShineOut is an information and support program for people with Cushing’s disease, and their friends and family.

Sign up here: ShineOut

Cushing's Disease - Rare Disease Quick Facts

Cushing's disease is a rare condition due to excess cortisol levels that result from a pituitary tumor secreting adrenocorticotropic hormone (ACTH), which stimulates cortisol secretion.  Cushing’s disease should not be confused with Cushing’s syndrome which is increased cortisol levels but that increase can be due to any number of factors. However, Cushing’s disease is the most common form of Cushing’s syndrome.

Symptoms

The symptoms related to Cushing's disease and Cushing's syndrome are the same, since both are related to an excess of cortisol. Also, symptoms vary extensively among patients and that, with the inherent fluctuation in hormone levels make it difficult to diagnosis both conditions.

Changes in physical characteristics of the body

• Fullness and rounding of the face
• Added fat on back of neck (so-called "buffalo hump")
• Easy bruising
• Purplish stretch marks on the abdomen (abdominal striae)
• Excessive weight gain, especially in abdominal region
• Red cheeks
• Excess hair growth on the face, neck, chest, abdomen and thighs

Changes in physiology/psychology

• Generalized weakness and fatigue
• Menstrual disorder
• Decreased fertility and/or sex drive
• High blood pressure that is often difficult to treat
• Diabetes mellitus
• Mood and behavior disorders

Diagnosis

The early stages of Cushing's disease may be difficult to recognize. However, if it is suspected, diagnosis is generally a 2 stage process. First to determine if cortisol levels are high, and if so, why they are high.

Tests to confirm high cortisol levels:

• 24-hour urine cortisol
• Dexamethasone suppression test (low dose)

Tests to determine cause:

• Blood ACTH level
• Brain MRI
• Corticotropin-releasing hormone test
• Dexamethasone suppression test (high dose)
• Petrosal sinus sampling

Treatment

Surgery

• Most patients with Cushing’s disease undergo surgery to remove the pituitary adenoma offers.
• If the tumor is isolated to the pituitary, cure rates of 80-85% are common.
• If the tumor has spread to nearby organs, cure rates of 50-55% are common.

Medicine (approved orphan drugs)

Signifor (pasireotide)

• Approved for patients with Cushing’s disease for whom pituitary is not an option or surgery has been ineffective.
• Signifor is a somatostatin receptor agonist that leads to inhibition of ACTY secretion (and subsequently decreased cortisol levels).

Korlym (mifepristone)

• Approved for patients with Cushing’s syndrome who have type 2 diabetes or glucose intolerance and have failed surgery (or not candidates for surgery).
• Korlym is a glucocorticoid receptor antagonist which in turn blocks the effects of the high levels of cortisol in the body. Korlym is used to treat high glucose levels due to elevated cortisol.

Medicines used but not indicated for Cushing’s disease include

Mitoden

ketoconazole

Metyrapone

Etomidate

Radiation

• Radiation therapy may be used in some patients and can be very effective in controlling the growth of these tumors.

Prognosis

In most cases, treatment can cure Cushing’s disease. If not treated properly, the chronic hypercortisolism can lead to excess morbidity and mortality due to increased cardiovascular and other risk factors.

For more information

National Library of Medicine, National Institute of Health

Cushing’s Disease Information (provided by Novartis Pharmaceuticals)

Images courtesy of the open access journal Orhanet Journal for Rare Diseases.  Castinetti et al. Orphanet J Rare Dis. 2012 7:41   doi:10.1186/1750-1172-7-41

- See more at: http://www.raredr.com/front-page-medicine/articles/cushings-disease-rare-disease-quick-facts-0

Research and Markets: Pituitary ACTH Hypersecretion (Cushing's Disease) - Pipeline Review Report, H1 2013 Edition

Research and Markets (http://www.researchandmarkets.com/
research/rdf6gm/pituitary_acth) has announced the addition of the "Pituitary ACTH Hypersecretion (Cushing's Disease) - Pipeline Review, H1 2013" report to their offering.

'Pituitary ACTH Hypersecretion (Cushing's Disease) - Pipeline Review, H2 2013', provides an overview of the indication's therapeutic pipeline. This report provides information on the therapeutic development for Pituitary ACTH Hypersecretion (Cushing's Disease), complete with latest updates, and special features on late-stage and discontinued projects. It also reviews key players involved in the therapeutic development for Pituitary ACTH Hypersecretion (Cushing's Disease).

Scope

- A snapshot of the global therapeutic scenario for Pituitary ACTH Hypersecretion (Cushing's Disease).

- 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.

- Coverage of products based on various stages of development ranging from discovery till registration stages.

- A feature on pipeline projects on the basis of monotherapy and combined therapeutics.

- Coverage of the Pituitary ACTH Hypersecretion (Cushing's Disease) pipeline on the basis of route of administration and molecule type.

- Key discontinued pipeline projects.

- Latest news and deals relating to the products.

Companies Involved in Pituitary ACTH Hypersecretion (Cushing's Disease) Therapeutics Development

• Isis Pharmaceuticals, Inc.
• Ipsen S.A.
• Novartis AG
• HRA Pharma, SA
• Cortendo Invest AB

Drug Profiles: Product Description, Mechanism of Action and R&D Progress

• LCI-699
• mifepristone
• ISIS-GCCRRx
• Inhibitors of ACTH receptor
• ketoconazole
• Next Generation Cortisol Inhibitor
• pasireotide Long Acting Release

For more information visit http://www.researchandmarkets.com/research/rdf6gm/pituitary_acth

Read more here: http://www.heraldonline.com/2013/06/17/4952623/research-and-markets-pituitary.html#storylink=cpy

Read more here: http://www.heraldonline.com/2013/06/17/4952623/research-and-markets-pituitary.html#storylink=cpy