Blogs in the Cushing’s Awareness Challenge 2015

Posted on March 30, 2015 by MaryO
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.

 

Those who have already signed up are:

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The Countdown Begins…

Posted on March 30, 2015 by MaryO

cushie-blogger-2015-large

Only 2 days until the Cushing’s Awareness Challenge 2015 begins.  At night, when I’m supposed to be sleeping, ideas for posts keep swarming through my head.  Sometimes, they form into fully-written posts.  Then, when I wake up, the posts are gone.

I plan to follow the suggestions to some extent and have a few ideas of my own.  Over the years, I’ve posted lots on several blogs but I don’t know if I can get 30 days of Cushing’s stuff together…again!  This is the fourth year of the Cushing’s Awareness Challenge.

At the moment, there are 14 participants in this challenge and growing.  Please follow their blogs.  The list is on the right side and is constantly updated as new URLs come in.

If you want to join us, its not too late.  Directions and suggestions for posts can be found here: http://cushie-blogger.blogspot.com/2015/03/cushings-awareness-challenge-2015.html

If you have ideas for what you’d like to read about (Cushing’s related, of course), please feel free to put it in the comments area.

 

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Battleground Diagnosis: The War to Survive Cushing’s Disease

Posted on March 8, 2015 by MaryO

Battleground Diagnosis, directed by filmmaker, Marc Harris, is a feature length documentary film that shares the stories of the survivors of a rare illness, Cushings Syndrome/Disease.

Marc Harris is the cousin of Karen Thames, Cushings survivor. He witnessed Karen go from a vibrant young Clinical Psychologist in practice, to someone whose health deteriorated due to the symptoms of Cushings, as she tried for many years to get answers from professionals. As she continued to eat a healthy, 1000 calorie per day diet, engage in exercise with multiple personal trainers, and follow through with referrals to consult with dietitians; Karen continued to gain weight at a rate of 5 pounds per week and experience rapidly declining health. Finally, after watching a Cushings episode of Mystery Diagnosis, Karen Found her answer! Ultimately, she sought the expertise of and treatment from a team of experts at the Seattle Pituitary Center in Seattle, WA. Karen had brain surgery in Seattle on November 16th, 2011. After a recurrence of Cushings, Karen had a Bilateral Adrenalectomy (BLA) in Wisconsin on August 21st, 2013.   This leaves Karen with Adrenal Insufficiency for life. However, she continues to fight and thrive!

After having a discussion with Marc in which Karen described that she knew hundreds of others who also had been through long journeys with Cushings, the diagnostic and treatment process; In November, 2012, Marc and Karen decided to document these stories.  Since that decision, Marc has traveled all over the country to interview Cushings patients who are all known to Karen. They all share their stories of struggle, pain, and triumph in the hopes that they can help the world to understand this rare disease.

Marc has also interviewed experts including Endocrinologists with expertise in Cushings, neurosurgeons, BLA surgeons, and mental health experts.

Karen’s continues to thrive everyday as a wife, a mother, and an overcomer! She has made the empowered conscious choice to use her professional background to advocate for the Cushing’s community and to be a voice for all of these brave warriors-Battleground!

We want to shout out loud to the world and spread the word about this documentary, which we hope will affect change and help save lives!

Follow our page and continue to support:http://www.Facebook.com/Hug.A.Cushie

Thank you! Thank you! Thank you!

Subscribe to Karen’s Thunderclap here: https://www.thunderclap.it/projects/23028-hug-a-cushie-battleground

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Cushing’s Awareness Challenge, Day Eight

Posted on April 8, 2014 by MaryO

It’s Here!

 

Dr. Cushing was born in Cleveland Ohio. The fourth generation in his family to become a physician, he showed great promise at Harvard Medical School and in his residency at Johns Hopkins Hospital (1896 to 1900), where he learned cerebral surgery under William S. Halsted

After studying a year in Europe, he introduced the blood pressure sphygmomanometer to the U.S.A. He began a surgical practice in Baltimore while teaching at Johns Hopkins Hospital (1901 to 1911), and gained a national reputation for operations such as the removal of brain tumors. From 1912 until 1932 he was a professor of surgery at Harvard Medical School and surgeon in chief at Peter Bent Brigham Hospital in Boston, with time off during World War I to perform surgery for the U.S. forces in France; out of this experience came his major paper on wartime brain injuries (1918). In addition to his pioneering work in performing and teaching brain surgery, he was the reigning expert on the pituitary gland since his 1912 publication on the subject; later he discovered the condition of the pituitary now known as “Cushing’s disease“.

Read more about Dr. Cushing

Today, April 8th, is Cushing’s Awareness Day. Please wear your Cushing’s ribbons, t-shirts, awareness bracelets or Cushing’s colors (blue and yellow) and hand out Robin’s wonderful Awareness Cards to get a discussion going with anyone who will listen.

And don’t just raise awareness on April 8.  Any day is a good day to raise awareness.

 

robin-harvey

 

 

MaryO

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Help Grow the Rare Disease Congressional Caucus

Posted on May 10, 2013 by MaryO

Take Action . Rare Disease Legislative Advocates at 10.56.06 AM

The Rare Disease Congressional Caucus will help bring public and Congressional awareness to the unique needs of the rare disease community – patients, physicians, scientists, and industry, and create opportunities to address roadblocks in access to and development of crucial treatments.  The Caucus will give a permanent voice to the rare disease community on Capitol Hill.  Working together, we can find solutions that turn hope into treatments.

The screen shot above shows what happens when you fill in the little text box with information about your disease.  The rest is automatically generated.

Please take 3 minutes to ask your Member of Congress to join the Rare Disease Caucus at http://bit.ly/RareAlert.

English: Capitol Hill

English: Capitol Hill (Photo credit: Wikipedia)

It’s easy – the Action Center has a draft letter that will automatically be sent to your Member of Congress – just put in your name and address & click send.  We also encourage you to personalize the letter to share information about your specific disease.  If your Congress Member is already on the Caucus, the letter will automatically populate as a thank you letter instead – these are just as important to send!

It can take up to 10 letters from constituents for a Member to respond so please share this Action Alert with your friends, family, facebook groups, Twitter, blogs & colleagues.

Join our Facebook event & invite your friends:   http://on.fb.me/17Mlpj

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