Day 10, Cushing’s Awareness Challenge 2016

Posted on April 10, 2016 by MaryO

This is one of the suggestions from the Cushing’s Awareness Challenge post:

What have you learned about the medical community since you have become sick?

This one is so easy. I’ve said it a thousand times – you know your own body better than any doctor will. Most doctors have never seen a Cushing’s patient, few ever will in the future.

If you believe you have Cushing’s (or any other rare disease), learn what you can about it, connect with other patients, make a timeline of symptoms and photographs. Read, take notes, save all your doctors notes, keep your lab findings, get second/third/ten or more opinions.  Make a calendar showing which days you had what symptoms.  Google calendars are great for this.

This is your life, your one and only shot (no pun intended!) at it. Make it the best and healthiest that you can.

When my friend and fellow e-patient Dave deBronkart learned he had a rare and terminal kidney cancer, he turned to a group of fellow patients online and found a medical treatment that even his own doctors didn’t know. It saved his life.

In this video he calls on all patients to talk with one another, know their own health data, and make health care better one e-Patient at a time.

7a4e4-maryoonerose

Filed under: Cancer, Cushing's, Cushing's Awareness Challenge 2016, Rare Diseases | Tagged: , , , , , , , , , , , , | Leave a comment »

Annual Holiday Hoolpa

Posted on November 23, 2015 by MaryO

pituitary-meeting

 

It’s that time of year again.

It’s time for the  Pituitary Patient Annual Holiday Party at the Pacific Brain Tumor Center.
John Wayne Cancer Institute Lobby, Santa Monica, CA.

December 08, 2015, 6:30-8:00pm

Family and Friends are Welcome!

View the flyer.

Filed under: Meetings and Conferences, pituitary | Tagged: , , | Leave a comment »

Day Sixteen, Cushing’s Awareness Challenge 2015

Posted on April 16, 2015 by MaryO

This is one of the suggestions from the Cushing’s Awareness Challenge post:

What have you learned about the medical community since you have become sick?

This one is so easy. I’ve said it a thousand times – you know your own body better than any doctor will. Most doctors have never seen a Cushing’s patient, few ever will in the future.

If you believe you have Cushing’s (or any other rare disease), learn what you can about it, connect with other patients, make a timeline of symptoms and photographs. Read, take notes, save all your doctors notes, keep your lab findings, get second/third/ten or more opinions.  Make a calendar showing which days you had what symptoms.  Google calendars are great for this.

This is your life, your one and only shot (no pun intended!) at it. Make it the best and healthiest that you can.

When my friend and fellow e-patient Dave deBronkart learned he had a rare and terminal kidney cancer, he turned to a group of fellow patients online and found a medical treatment that even his own doctors didn’t know. It saved his life.

In this video he calls on all patients to talk with one another, know their own health data, and make health care better one e-Patient at a time.

 

7a4e4-maryoonerose

Filed under: Cancer, Cushing's, Cushing's Awareness Challenge 2015, Rare Diseases | Tagged: , , , , , , , , , , | Leave a comment »

Abnormal Metabolites Found in Cured Cushing’s Patients

Posted on May 3, 2013 by MaryO

Patients with Cushing’s syndrome have abnormal brain metabolites suggestive of neuronal dysfunction even after they appeared to have been cured, according to a study presented at the annual European Congress of Endocrinology, held from April 27 to May 1 in Copenhagen.

(HealthDay News) — Patients with Cushing’s syndrome have abnormal brain metabolites suggestive of neuronal dysfunction even after they appeared to have been cured, according to a study presented at the annual European Congress of Endocrinology, held from April 27 to May 1 in Copenhagen.

Using proton magnetic resonance spectroscopy, Eugenia Resmini, M.D., Ph.D., from Hospital Sant Pau in Barcelona, Spain, and colleagues measured metabolites in the hippocampi of 18 adults with Cushing’s syndrome who had been biochemically cured and 18 age- and education-matched healthy adults.

The researchers found that the two groups had similar left and right total hippocampal volumes. Patients with Cushing’s syndrome had significantly lower NAcetyl-aspartate in the left and right hippocampus as well as significantly lower NAcetyl-aspartate plus N-Acetyl-aspartyl-glutamate in the right hippocampus. In addition, patients with Cushing’s syndrome had significantly higher glutamate plus glutamine in both hippocampi. The alterations are suggestive of neuronal dysfunction, according to the authors.

“Persistently abnormal metabolites are evidenced in the hippocampi of Cushing’s syndrome patients despite endocrine cure,” Resmini and colleagues conclude. “These functional alterations could be early markers of glucocorticoids neurotoxicity and would precede hippocampal volume reduction.”

Abstract
More Information

From HealthDay

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Know Your Number

Posted on April 29, 2013 by MaryO
English: "Dr. Harvey Cushing," oil o...

English: “Dr. Harvey Cushing,” oil on canvas, by the American artist Edmund Tarbell. Courtesy of the Dittrick Medical History Center. (Photo credit: Wikipedia)

From my email:

As an advocate for patients with Cushing’s disease and their supporters, you certainly understand the importance of continually monitoring cortisol.

April 8th marks Cushing’s Awareness Day and the birthday of Dr. Harvey Cushing, who first described the disease in 1912. We want to use the month of April to bring attention to this disease. In honor of this day, Novartis Pharmaceuticals Corporation is kicking off “Know Your Number,” an important new program emphasizing the importance of cortisol regulation.

Being an advocate for those with Cushing’s disease and for those who care for them, you know that even after a successful pituitary surgery, where cortisol levels return to normal, there is still up to a 35% risk the pituitary tumor could begin to grow again, thus causing hypercortisolism. This potential rise in cortisol is also true for patients who are currently taking medication to control their Cushing’s disease. Over time, this control may begin to diminish. These important facts make it essential that your members are aware of the need to monitor their cortisol level.

Novartis Pharmaceuticals Corporation is initiating an important new program, and we would like to partner with Cushing’s Help and Support to bring this information to your membership and to all patients with Cushing’s disease. “Know Your Number” reminds both endocrinologists and patients that hypercortisolism can have devastating consequences on a patient’s body and emotions. “Know Your Number” promotes follow-up cortisol testing to help identify those patients whose cortisol levels have increased.

Please reach out to your membership with this message during the month of April as we celebrate Dr. Harvey Cushing’s birthday.

To learn more about this program and Cushing’s disease, and to download a discussion guide, please visit www.CushingsDisease.com

Know Your Number.

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