Cushing’s Awareness Challenge: Day 11

Posted on April 11, 2014 by MaryO

robin-uncontrolled

Robin has shared this quote from Dr. Prevedallo.  You can read more at the link at http://brainsurgery.upmc.com/_pdf/Review-of-Endocrin-Cushings.pdf

Over the years, I have seen that this is true, sometimes even for controlled Cushing’s.  Far too many Cushies have died.

Here are some of those that I know of:

Cushing’s is a terrible disease.

There is another Cushie I should add to this list. During the time I was home from NIH just before pituitary surgery, a college classmate of mine (I didn’t know her) did die at NIH of a Cushing’s-related problem. I’m so glad I didn’t find out until a couple months later!  I still have the college alumni magazine that mentioned this.  I’ll have to find that and add it to the In Memory list.

My husband shared a bit about her in my bio:

During the same time Mary was at NIH, another woman had the same operation. She came from Mary’s home town. They were class mates at college. They had the same major. They were the same age. They had the same surgical and medical team. Mary recovered. The other woman died during surgery.

 

I know we’re always fighting with doctors to get diagnosed, to get treated but reading the stories of these people will hopefully inspire people to fight even harder to be heard.

Stay safe – don’t get added to this list!

8e1d2-maryo_colorful_zebra

 

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Cushing’s Awareness Challenge, Day 3: Symptoms

Posted on April 3, 2014 by MaryO

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

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

Posted on April 3, 2014 by MaryO

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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Through The Art Of Makeup, People With Rare Pituitary Disorders Now Have Unique Resources To Help Address Common Physical And Emotional Changes

Posted on March 24, 2014 by MaryO

Did you know that applying contour powder on certain areas of your face, like the outer rim of the jaw, along the hairline or along the hollows of the cheek, can help make enlarged features less noticeable? Seems like a basic makeup tip, right? Well, to a person with a pituitary disorder that dramatically changes one’s facial features, this type of information may make a major difference – not only physically, but also psychologically.

This is why Novartis has teamed up with Kevyn Aucoin Beauty (KAB) to bring The Highlights Project to those living with acromegaly and Cushing’s disease. The program offers a variety of virtual tools such as makeup suggestions from professional artists and video demonstrations. These resources address common concerns expressed by patients while also educating about these rare, but serious pituitary disorders.

Kevyn Aucoin, founder of KAB and famed Hollywood makeup legend, was diagnosed with acromegaly in 2001 at the age of 40 and passed away less than 12 months later. Aucoin believed in the transformative nature of makeup and saw it as a reflection of both inner and outer beauty. In this spirit, The Highlights Project features a series of makeup tutorials, tips and inspirations designed to help enhance the self-image of pituitary patients. The program also includes the perspective of a psychotherapist who specializes in helping patients with acromegaly and Cushing’s disease.

Like so many other people with acromegaly and Cushing’s disease, Kevyn went undiagnosed for years and faced both emotional and physical challenges as a result of his condition. “Through Kevyn Aucoin Beauty’s partnership with Novartis on The Highlights Project, we hope that we can inspire others living with these pituitary disorders to see their own beauty and view makeup as Kevyn did, not as a mask, but as a tool for discovery,” said Desiree Tordecilla, Executive Vice President, Kevyn Aucoin Beauty.

Acromegaly and Cushing’s disease are pituitary disorders caused by the presence of a noncancerous tumor on the pituitary gland. The symptoms often include highly visual physical changes in the body. For people with acromegaly, enlarged facial features, jaw and brow protrusions, thickening of the skin and skin tags are common. People with Cushing’s disease frequently experience uncontrollable weight gain, facial fullness and redness, a buffalo hump, acne and oily skin. Beyond the external physical changes, these conditions often also cause serious health complications such as cardiovascular issues, fatigue, muscle weakness and cognitive changes. Those living with uncontrolled acromegaly and Cushing’s disease are also at an increased risk of death. Due to the rare nature of these diseases, receiving an accurate diagnosis can be difficult and may take several years – therefore, education and awareness is critical.

The Highlights Project aims to provide support and help those with acromegaly and Cushing’s disease manage the physical manifestations and psychosocial challenges often associated with these conditions.

“As someone who was self-conscious about how unfeminine my facial features appeared, I was amazed by the impact the simple makeup tricks I picked up from The Highlights Project had on my self-esteem,” said Shannon Goodson, who was diagnosed with acromegaly in 2008. “Staying positive, educating yourself about the condition and monitoring hormone levels to ensure the disease is under control are the first steps to empowering yourself and understanding that you are so much more than your diagnosis.”

The mission of The Highlights Project is to help put a face to the challenges those with acromegaly and Cushing’s disease may encounter and serve as a vessel for learning. Novartis is committed to helping to transform the care of rare pituitary conditions and bringing meaningful solutions to patients. To help support acromegaly and Cushing’s disease patients, and learn more about The Highlights Project, visit TheHighlightsProject.com. For more information about these diseases, visit AcromegalyInfo.com and CushingsDisease.com.
Read more from Journal Sentinel: http://www.jsonline.com/sponsoredarticles/health-wellness/through-the-art-of-makeup-people-with-rare-pituitary-disorders-now-have-unique-resources-to-help-address-common-physical-and-emotional-changes8087390808-251841151.html#ixzz2wtDUV9iF

 

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Suspected case of Cushing’s Syndrome with history of taking medicines prescribed by registered Chinese medicine practitioner

Posted on February 19, 2014 by MaryO

The Department of Health (DH) today (February 18) alerted clients who have consulted a registered Chinese medicine practitioner (CMP) Mr Chan Kong-kin (CMP Chan), practising at G/F, No.25, Leung Tin Village in Tuen Mun, should consult health-care professionals for advice if they have been supplied with medicines suspected to be Western medicines.

The appeal followed the DH’s investigation into two public complaints. The first complaint involved a 23-year-old woman who consulted CMP Chan for management of eczema. She was given a type of green pills, two types of yellow pills and a type of red-yellow capsules for treatment of her disease for about one year.

She developed round face and increased facial hair which are features compatible with Cushing’s syndrome and steroid overdose can cause the syndrome. The patient was admitted to a public hospital on February 5 for investigation and was discharged on February 7.

The second complaint involved a 24-year-old woman who was recommended by the first complainant to consult CMP Chan for management of allergic rhinitis and eczema. She was given similar medicines as those for the first complainant for three days.

Her condition was stable.

Today, chemical analysis by the Government Laboratory on the patients’ drug samples showed that Western medicine Dexamethasone was detected in the red-yellow capsule.

Dexamethasone is a potent steroid. Taking dexamethasone for a long time, especially when in substantial dosage, can cause side effects such as moon face, high blood pressure, high blood sugar, muscle atrophy, peptic ulcer and even osteoporosis.

DH has set up a hotline 2125 1133 for public enquiries related to the medicines prescribed by the CMP.

It will operate from 9am to 9pm, Monday to Friday.

“Preliminary investigation by the DH revealed that pills and capsules were found in the CMP’s premises and all have been seized for further investigation,” the spokesman said.

“In December 31, 2012, the DH announced that CMP Chan was found in possession of Part I poisons and unregistered pharmaceutical products in the same clinic which also involved medicines with steroid. The DH subsequently took enforcement action and the relevant legal proceeding is in progress.

The case has also been referred to the Chinese Medicine Council of Hong Kong for follow-up action,” the spokesman added

“On completion of our investigation, the DH will seek advice from the Department of Justice regarding possible contravention of the Pharmacy and Poisons Ordinance (Cap 138) for the illegal sale or possession of Part I poisons. According to the Ordinance, the maximum penalty for each offence is a fine of $100,000 and two years’ imprisonment. Besides, the DH will also refer this case to the Chinese Medicine Council of Hong Kong for possible disciplinary action”, the spokesman remarked.

People who have been supplied with medicines by the concerned CMP and are in doubt should consult health-care professionals as soon as possible.

They should submit the medicines to the Chinese Medicine Division of DH at 16/F, AIA Kowloon Tower, Landmark East, 100 How Ming Street, Kwun Tong, during office hours for disposal.

Source: HKSAR Government

From http://7thspace.com/headlines/453015/suspected_case_of_cushings_syndrome_with_history_of_taking_medicines_prescribed_by_registered_chinese_medicine_practitioner.html

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