Straight Talk Cushing’s

awareness

 

On April 8th, people from around the world unite in support of Cushing’s Disease Awareness Day.

In this animated video, learn more about Cushing’s disease, including the mechanism of disease, clinical manifestations, symptoms and diagnosis challenges.

Day 8, Cushing’s Awareness Challenge 2016

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.


harvey-book

I found this biography fascinating!

I found Dr. Cushing’s life to be most interesting. I had previously known of him mainly because his name is associated with a disease I had – Cushing’s. This book doesn’t talk nearly enough about how he came to discover the causes of Cushing’s disease, but I found it to be a valuable resource, anyway.
I was so surprised to learn of all the “firsts” Dr. Cushing brought to medicine and the improvements that came about because of him. Dr. Cushing introduced the blood pressure sphygmomanometer to America, and was a pioneer in the use of X-rays.

He even won a Pulitzer Prize. Not for medicine, but for writing the biography of another Doctor (Sir William Osler).

Before his day, nearly all brain tumor patients died. He was able to get the number down to only 5%, unheard of in the early 1900s.

This is a very good book to read if you want to learn more about this most interesting, influential and innovative brain surgeon.


What Would Harvey Say?

 

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

 

MaryO

Fifth Annual Cushing’s Awareness Challenge

awareness

 

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 Fifth 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, on the Facebook page, in one of the Facebook Groups, on the message boards 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)
  • 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…?

 

maryo colorful zebra

Day Eight, Cushing’s Awareness Challenge 2015

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.

 

 

MaryO

Ways to “Give Back”

Now that Cushing’s Awareness Month is almost upon us, here are some ways to help spreading awareness.

How can YOU help spread the word?

  • We always need people to be interviewed in the BlogTalk Interview series.  These interviews usually take place on Thursday nights at 7:30PM Eastern but you can do this at any time that’s convenient for you.

If you’re interested in being interviewed, there is more information here.  You can sign up by checking off the box on the Add Your Bio form, sending an email to MaryO, posting in this topic on the boards or filling out this form.

You do not need to be diagnosed to be interviewed!

Spread The Word! Cushing’s Pocket Reference

Robin Writes:

This has been a concern of mine for some time. Your post spurred me on to do something I’ve been meaning to do. I’ve designed something you can print that will fit on the business cards you can buy just about anywhere (Wal-mart included). You can also print on stiff paper and cut with a paper cutter or scissors. I’ve done a front and a back.

Cushing's Pocket Reference

Here are the links  (NOTE:  The phone number is correct on the images above but incorrect on the links below and will be fixed soon):

• Front: This card is being presented by a person who cares.
• Back (The same for everyone)

This Topic on the Message Boards

 

 

Cushing’s Awareness Day! April 8, 2015

What Can *YOU* Do to help?

Ways to Give Back… in no particular order:

    • Endocrine Society News – Cushing’s as Cover Story!ENLetters@endo-society.org to send a letter to the editor. Some will be published and the doctors (endos!) who read this will get the patient’s eye view.
    • Participate on the message boards and help support others, especially newcomers. If you see a post with no, or few responses, say something so that the person doesn’t feel like they’re being ignored. I’ve noticed that many people here are very good at this 🙂
    • If you’ve had successful surgery, stick around to offer hope to those who come after. Far too many cured Cushies leave, and present an unbalanced look of life after Cushing’s.
    • Add (or update) your bio.
    • Attend the chats.
    • Offer to talk to others offline.
    • Send cards or little notes to others who are hurting– either online, or through snailmail. There are some free eCards available through Hallmark, Bluemountain, many places. If you don’t know someone’s email address for an eCard, you can send it to yourself, get the link (URL) when it comes to you and paste that into a PM for the person.
    • Use the “Tell a Friend” links on any page to share it with someone who would be interested.
    • Be a board moderator.
    • Visit other Cushies in the hospital, or go with them to doctor appointments. Call them when you know that they’re “down” – or happy!
    • Print your own Cushing’s brochures. These work best on tri-fold brochure paper.
    • Print some brochures and pass them out to doctors, Weight Watchers and other similar meetings, people who look Cushie. There are also Cushings-Help business cards available.
    • Wear your Cushing’s Awareness bracelet or pin often and tell everyone what it means.
    • If someone asks how you’re doing, explain Cushing’s to them, at least a simple version! I’ve been doing this with my piano students and parents – they’re finally getting it!
    • Submit your Helpful Doctor info – we need all the good doctors we can get.
    • Submit any Helpful Books you may have read – we need all the info we can get.
    • Attend meetings, be involved
    • Help Jayne get Cushing’s Awareness Day enacted.
    • Get a Cushing’s Awareness Silicone Bracelet – or two! These are are made from 100% silicone, and are stronger and longer lasting than rubber bracelets. Reminderband works closely with the production facility to guarantee that quality is consistent in all sizes and colors. To ensure that we are producing the highest quality silicone bracelets on the market, the Reminderband team conducts ongoing production tests and research. Rest assured, Reminderbandis second to none.
    • Design your own awareness bands.
    • Participate in The Clothes Closet, the book project
    • Someday, maybe you’ll meet a Cushie without a computer. Offer to print out helpful pages for him/her, or invite her over to check out your computer. Invite him to a local meeting, or give her the number to call for more info.
    • Help someone fill out insurance or disability forms.
    • Ask someone how you could help them.
    • Share your good news – it spreads like wildfire!
    • Pray, or send healing thoughts, to those who need them
    • Post relevant News Items that may help someone else.

Thank you for your contribution to the Cushing’s Help and Support Community!

When I started Cushings-Help.com, it was my intention to make it a place for all to receive much needed free help and support. That is still my intention; however, these costs keep mounting, so you now have the option of making a donation to help with the running of these websites. If you are satisfied with our support, information and/or the help you receive here, please consider making a donation. Your donation will help to offset the costs of keeping these sites online and free to all who need them.

To register and participate in any of the Cushing’s Help and Support websites and services is free. However, it is through the generosity of our members that these sites remains free. Members who choose to “subscribe” or “donate” help keep the website fees paid so that the thousands of members can enjoy the support offered.

Your donation helps with the upkeep of the seven sites in the Cushing’s Help family, cushings-help.com, addisons-help.com, cushings-support.com, cushings-info.com, cushings.invisionzone.com/ [message boards], cushie.info and cushingsonline.com; the message boards, the CushieWiki, podcasts, chatrooms and much more.

Any size donation will be much appreciated.

Please Help Keep Cushing’s Help and Support Running!

Donate to Please Help Keep Cushings Help Running!

 

Thank you so much for your donation!

  • Sign Amber’s Petition. www.ipetitions.com/petition/CushingsDiseaseAwarenessAmber writes:

    Thought I would explain what this petition can do….First of all, it adds power and substance to our efforts to have a Nationally recognized day if we have an extensive, following.

    Second, this petition and all the signatures can be printed and sent to a Senator, politician, or medical professional that may be will to take on the cause.

    Third, this petition and its list of signatures are IDEAL for releasing to the press and media for coverage and will assist GREATLY in getting the word out there.

    It is so simple. The petition has a place to add your name and a comment if you want. PLEASE take a moment to sign and formward it on to all the people in your address book, your friends and family.

    We all get forwarded messages all the time, but this one is dear to our hearts and can make a differnce! WHATS STOPPING YOU!?

    PLEASE SUPPORT OUT EFFORTS TO RAISE AWARENESS! YOUR HELP IS NEEDED AND IT IS SO EASY!

  • CherylF suggests:

    I contacted Senator Inhofe’s (OK) office recently, and he is happy to reintroduce the Cushings Awareness Day Resolution for April 8, 2007.Please contact your US Senator’s office and ask them to support this Resolution. I’m not sure when Senator Inhofe will try and contact other senators but if you send a letter soon, and call your senator to let him know your letter is coming, and that Senator Inhofe is going to reintroduce the Resolution, it will truly help.

    Last year the Resolution was introduced, but to my understanding, only one senator-another from Oklahoma was the only one to contact Senator Inhofe’s (Okla) office to co-sponsor the Resolution.

    If you send a letter requesting it, you might also request that a reply be sent back to you . Please try to send the letter in the next two weeks if possible.

    Last year we had a small Conference in OKC celebrating the passing of the Resolution, and there is some information on that conference on the CUSH website (CUSH.org), and I believe on this one as well. We won’t be having a specific conference in OKC, but ask that you bring awareness in your own states, communities as you can. Last year a TV station in OKC aired a small segment about the conference & Cushings Awareness Day, as did one in Nebraska- with Autumn as the contact person.

    As the OK CUSH rep as well, I might have something for those around the OK area, a small get together if anyone is interested…more like a dinner or luncheon so we can visit each other. You can always contact me for more info if you’d like…together we can make a difference!
    Thank you in advance, Cheryl Farrar- CUSH Vice President

  • Contact your Senator Print out a sample letter to send to your congress person or senator or download it in Word format.More information here
  • Follow Jayne’s Lead. She writes:

    Of course, I’ll be supporting the day and writing letters and emails and making phone calls. I hope to find us a celebrity ribbon wearer. Something else I am working on is national TV recognition with the major networks and National publications. You can email them as well on their “contact us” info. Contact the hosts of the show and the producers to mention April 8th and Cushing’s Awareness.I am going to find out information on getting money (grant) to publish magazine adds/articles for the April editions, if not this year then for next year. I know they are probably being printed, but I just thought of this idea. My local paper will run a small 2×3 ad for starting at $300. I want the whole page! I thought about having a yard sale to raise money to put in an ad, but doubt that I’d make enough. Oh Well!

    Something else I thought about is getting a chain pharmacy to post cushings info for that week prior to the 8th. Medical school journal/papers can also be contacted. I know I must have emails over 100 doctors last year on the 7th (once I know that it had passed). I’ll be setting up a booth at the women’s Forum again this year. I hope to set up at some health expo’s and at the local Hospital or at least make/pass out flyers.

  • Wear Cushing’s Bracelets or T-Shirts to promote Cushing’s Awareness. Cushing’s Awareness T-Shirts and other products are available here: Cushie GiftStore.  Also check out Robin’s Cushie Store.
  • Post your ideas and what you have done here:http://cushings.invisionzone.com/index.php?showtopic=19173

2006:

For Immediate Release:

April 6, 2006

INHOFE DESIGNATES ‘NATIONAL
CUSHING’S SYNDROME AWARENESS DAY

More info here


April 8, 2006, the Cushing’s Understanding, Support & Help Organization (CUSH) petitioned in the USA to have April 8 be declared as Cushing’s Awareness Day. This date was chosen because it was Dr. Harvey Cushing’s Birthday. More info here


The Cushing’s Awareness Day Proclamation, fromhttp://thomas.loc.gov/cgi-bin/query/z?c109:S.RES.423:

Designating April 8, 2006, as `National Cushing’s Syndrome Awareness Day’. (Agreed to by Senate)

More info here

%d bloggers like this: