Cushing’s Awareness Month Day 1: Know Your Body

Posted on April 1, 2015 by MaryO

Another great Cushing’s Awareness 2015 Blog!

Living with Cushing's Disease

Today begins Cushing’s Awareness Month, in celebration of Dr. Harvey Cushing’s birthday on April 8th. Not only is he the father of modern neurosurgery, but he is also the one that discovered – and researched, and researched some more – the phenomenon now known as Cushing’s Disease.  Our guru/Gandhi/den mother, Mary O., came up with the idea of posting a blog a day during the month of April as a way for bloggers like myself to help raise awareness for this disease.

Today was an insane day at my job. Anyone that works in the legal field understands the crunches, deadlines and craziness when several matters collide into one huge mess. Not only are you stretched thin, but you also feel like you leave bits and pieces of yourself scattered throughout your workplace like breadcrumbs. Days like those are incredibly taxing on anyone, but the physical, emotional and mental ramifications for…

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Past Cushing’s Awareness Challenge Bloggers

Posted on April 1, 2015 by MaryO

The page over at http://cushie-blogger.blogspot.com/ is starting to load pretty slowly and I’m guessing that it’s maybe because of all the blog posts it has to load.  So, I’m going to take all the Cushing’s Awareness Challenge Bloggers from 2012-2014 and post them here so I can delete the blog rolls that they’re in now.

Eventually, when I have time, I’ll add the blogs to the general “All Cushie Blogs” list.  Hopefully, that will speed the page up!  I don’t know if there was a problem last year because I’m sure we had more than 2 of us participating!

 

 

Cushing’s Awareness Challenge 2013

Cushing’s Awareness Challenge 2012

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How Patients Are Driving Research & Cures For Their Own Rare Diseases

Posted on April 1, 2015 by MaryO

By definition, a rare disease is one that strikes fewer than 200,000 Americans, sometimes only a few dozen. But with 7,000 rare diseases known to doctors, and more emerging all the time, nearly 1 in 10 Americans has a rare disease. For most, there is no treatment, let alone a cure. Just getting an accurate diagnosis often requires a medical odyssey, and 30 percent of children with a rare disease die before age 5.

For decades, drugmakers were reluctant to invest in rare-disease treatments, preferring to focus on mass-market drugs for cholesterol, heart trouble and other common problems. Then, starting a decade ago, patents on some of the industry’s most lucrative medicines began to expire, and cheap generic drugs started wiping out tens of billions of dollars in annual revenue.

So many companies shifted money to rare-disease drugs, knowing that those medicines cost less to develop and will face limited competition. Some already sell for $100,000 or more for a year of treatment, although drugmakers usually give financial aid to patients and big discounts to insurers and government health programs.

“They’re recreating the blockbuster,” said analyst Steve Brozak of WBB Securities. “There’s more money, fewer patients and it’s 10 times easier to defend high prices to payers.”

Last year, the Food and Drug Administration approved a record 17 medicines for rare diseases. More than 450 others are in development to treat a wide variety of ailments — rare cancers, sickle-cell disease, the hormonal disorder Cushing’s disease and a bleeding ailment called thrombocytopenic purpura, as well as hemophilia, Hodgkin’s lymphoma and pulmonary fibrosis.

Patient-advocacy groups are getting better at raising money for research and building registries of patients that could be used to recruit participants for drug studies, a process that otherwise can take years.

Read more at How Patients Are Driving Research & Cures For Their Own Rare Diseases.

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A Month of Blog Posts for the Cushing’s Awareness Challenge! Day One

Posted on April 1, 2015 by MaryO

The first of the Cushing’s Awareness Challenge 2015 blog posts!

a tale of two tumors

The Cushing’s community, led by our “fairy godmother” MaryO, has been hosting a Cushing’s Blogging Challenge for the last several years.   You can find more information here:

http://cushie-blogger.blogspot.com/2015/03/cushings-awareness-challenge-2015.html

April 8 is the birthday of Dr. Harvey Cushing’s, the “father of neurosurgery” and the first physician to document Cushing’s.  To celebrate his birthday, Cushing’s patients are banding together to write blog posts on topics related to Cushing’s every day in the month of April.  I am going to try and stick to this theme, but weave in a few posts here and there about what is going on post-Cushing’s as well.  So stay tuned!

For my first post, I would like to take a little time to talk about MaryO and how much I, and the rest of the Cushing’s community, owe this wonderful woman.  MaryO first started seeing the first signs and symptoms of Cushing’s in the early 1980s…

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Day 1: Cushing’s Awareness Challenge 2015

Posted on April 1, 2015 by MaryO

April is always Cushing’s Awareness Challenge month because Dr. Harvey Cushing was born on the 8th.

30-posts

 

Thanks to Robin for this wonderful past logo!  I’ve participated in these 30 days for Cushing’s Awareness several times so I’m not quite sure what is left to say this year but I always want to get the word out when I can.

As I see it, there have been some strides the diagnosis or treatment of Cushing’s since last year.  More drug companies are getting involved, more doctors seem to be willing to test, a bit more awareness, maybe.

This year’s logo, also thanks to Robin:

cushie-blogger-2015-large

 

April Fool's Day

How fitting that this challenge should begin on April Fool’s Day.  So much of Cushing’s  Syndrome/Disease makes us Cushies seem like we’re the April Fool.  Maybe, just maybe, it’s the doctors who are the April Fools…

Doctors tell us Cushing’s is too rare – you couldn’t possibly have it.  April Fools!

All you have to do is exercise and diet.  You’ll feel better.  April Fools!

Those bruises on your legs?  You’re just clumsy. April Fools!

Sorry you’re growing all that hair on your chin.  That happens as you age, you know.  April Fools!

Did you say you sleep all day?  You’re just lazy.  If you exercised more, you’d have more energy. April Fools!

You don’t have stretch marks.  April Fools!

You have stretch marks but they are the wrong [color/length/direction] April Fools!

The hump on the back of your neck is from your poor posture. April Fools!

Your MRI didn’t show a tumor.  You couldn’t have Cushing’s. April Fools!

This is all in your mind.  Take this prescription for antidepressants and go home.  April Fools!

If you have this one surgery, your life will get back to normal within a few months. April Fools!

What?  You had transsphenoidal surgery for Cushing’s?  You wasted your time and money. April Fools!

I am the doctor.  I know everything.  Do not try to find out any information online. You could not have Cushing’s.  It’s too rare…  April FOOL!

All this reminds me of a wonderful video a message board member posted a while ago:

It’s Literally Impossible to Have Cushing’s

 

So now – who is the April Fool?  It wasn’t me.  Don’t let it be you, either!

 

 

 

 

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