The Voices of Cushing’s Disease

The perspectives of individuals living with Cushing’s disease, their caregivers and advocates.

In creating this series, Novartis hoped to shine a spotlight on key factors involved in living with Cushing’s disease, including diagnosis, disease management and the importance of a strong support network.

The video series has been posted on the Novartis YouTube channel and can be viewed via the following links:

Fourth Annual Cushing’s Awareness Challenge

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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…?

Someone Asked What I Did For Rare Disease Day…

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My husband and I went to the Rare Disease Day at NIH and told everyone who would listen about Cushing’s.  We passed out a whole box of Cushing’s business cards.

Tweeting/retweeting info about Cushing’s and Rare Disease Day today.

Adding info to one of my blogs about Cushing’s and RDD.

Adding new and Golden Oldies bios to another blog.

Getting the next Cushing’s Awareness Blogging Challenge set up for April.

And updating https://www.facebook.com/CushingsInfo with a bunch of info today (and every day!)

Menopause, Obesity, and Diabetes Top ENDO 2015 Agenda

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Menopause, obesity, and diabetes will top the clinical agenda at the Endocrine Society’s annual meeting, ENDO 2015, with a focus on personalized and precision approaches to disease management.

Endocrine-disrupting chemicals will also take the stage at the meeting, which runs from Thursday, March 5, through Sunday, March 8, in San Diego, California. New research to be presented includes an examination of the economic costs of exposure to these chemicals and their potential teratogenic effects.

Other topics on the agenda are the effects of male obesity on a couple’s fertility, a nasal spray that could cut calorie consumption, and a renewed look at the long-term safety of menopausal hormone therapy.

“The Endocrine Society is really known for cutting-edge research,” society president Richard J Santen, MD, from the University of Virginia School of Medicine, Charlottesville, told Medscape Medical News.

“For many of us in the field, it’s the premier meeting for both science and clinical reviews and new science presentations and networking,” added steering committee chair Matthew Ringel, MD, from Wexner Medical Center, Ohio State University, Columbus. “We’re excited about trying to increase the clinical-science part of the meeting and what would be relevant to clinical, basic, and translational-research attendees.”

As always, the meeting will feature bench science, bedside medicine, and the translation from one to the other, including plenary talks on both precision and personalized approaches to menopause, new genetic discoveries in obesity that could point to novel treatment targets, the link between antihyperglycemic therapy and cardiovascular disease, and fresh insights into the mechanisms of polycystic ovary syndrome.

The meeting begins the morning of Thursday, March 5, with two presidential plenary talks: “Genomics, Pharmacogenomics, and Functional Genomics in Menopausal Women: Implications for Precision Medicine,” by oncologist James N Ingle, MD, from the Mayo Clinic, Rochester, Minnesota, and “Personalized Menopause Management: Clinical and Biomarker Data That Inform Decision Making,” by JoAnn E Manson, MD, of Brigham and Women’s Hospital, Boston, Massachusetts.

“This issue of precision medicine has been such a hot topic, but people don’t really understand it. So the fact that we’re going to feature it in the very first talk is of interest,” Dr Santen said.

While this talk will offer a glimpse of the future, individualized approaches to menopause treatment are already here and will be featured in the session immediately following the plenary, when “Treatment of Symptoms of Menopause: An Endocrine Society Clinical-Practice Guideline” will be presented.

Wide Range of Endocrine Topics Will Be Addressed

Two other clinical-practice guidelines, on management of primary adrenal insufficiency and treatment of Cushing’s syndrome, will also be revealed during the meeting, on Saturday and Sunday, respectively.

And in a special scientific session on Friday, Janet Woodcock, MD, director of the US Food and Drug Administration’s Center for Drug Evaluation and Research, will speak on “Safety and Efficacy of Diabetes Drugs: Steering Between Scylla and Charybdis.”

Meanwhile, clinically focused “Meet the Professor” sessions will address obesity and diabetes, along with a wide range of other endocrine topics, including flushing and sweating disorders, vitamin D, thyroid, gynecomastia, endocrine tumors, testosterone therapy, and genetic counseling for endocrine patients. .

The meeting’s move — from June in previous years to March — means that it is no longer back-to-back with the annual scientific sessions of the American Diabetes Association (ADA).

“We’ve moved the meeting to March, which allows us some separation from the ADA to give us an opportunity to pull in some top diabetes topics and speakers. We’ve always done that over the years, but it allows a little more focus on that area,” Dr Ringel noted.

And, he hopes, more clinicians will be able to attend both meetings going forward. “Years ago, people tried to go to both, one after the other….It’s especially hard for clinicians to be away for that length of time,” he said.

There’s another new feature for ENDO 2015 that is likely to prove popular: “Endocrine Science Social” events will take place at 6:00 pm following the afternoon symposia each day, so attendees can discuss the topics over drinks.

“The philosophy is there’s synergy between scientists and clinicians,” Dr Santen explained.

“With more than 8000 attendees expected, the meeting overall is too big for networking, so we’re going to have a social gathering after the sessions each afternoon.”

Rare Diseases, Loud Voices

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This year, Novartis is adopting the theme, “Rare Diseases, Loud Voices,” is offering content aimed at helping to amplify the voices of patients, families and caregivers impacted by rare diseases including Cushing’s disease. We are providing educational materials and resources highlighting several rare diseases thorough a Rare Disease Day specific microsite on our website (http://www.novartisoncology.com/world-rare-disease-day-2015.jsp) and across our social media channels, including Twitter, YouTube, Facebook, Pinterest, LinkedIn and Instagram.

On the microsite you will see we have also just launched two new resources – a whiteboard animation video (also posted to the Novartis YouTube page) and an infographic (also posted to the Novartis Pinterest page (https://www.pinterest.com/pin/384002305703664913/).

As part of our Twitter activity, several Cushing’s disease-specific tweets have been issued this week, featuring the hashtags #GetLoud, #RDD2015 and #raredisease, as well as complementary visual content to try to help tie Cushing’s disease to the larger RDD discussion.