🦓 From a Past Blogging Challenge: Day 1: Blogging with the Cushies, featuring MaryO

Since not too many people signed up this year, I’m going to be reposting some past Blogging Challenge Posts:

MaryO kicks off Cushing’s Awareness Month with a blog post about a testing method that had been discussed for years but many of us haven’t been tested this way. 

From http://cushingsmoxie.blogspot.com/2017/04/day-1-blogging-with-cushies-featuring.html?m=1

đź“… Register for 2018 RARE Patient Advocacy Summit

The RARE Patient Advocacy Summit is the can’t-miss event of the year for rare disease stakeholders. The Summit will take place October 3-4 at the Hotel Irvine in Irvine, California, and it is the largest gathering of rare disease patients, advocates and thought leaders worldwide.

Take advantage of this opportunity to connect and learn from more than 200 experts in rare disease leading 100 educational sessions. This year, the Summit offers four specialized learning tracks to help you spark change including:

  • Living with a life-altering condition, before and after diagnosis
  • Becoming successful architects of your health and that of your disease community
  • Building on advances as a patient, partner, and driver in drug development
  • Learning about the latest science and technology that drive innovation

The RARE Patient Advocacy Summit offers many unique opportunities to support the rare community by participating in the largest educational event for rare patients and advocates. Together, we are strong. Join Global Genes, partners and rare disease community members from all walks of life to become equipped with the tools needed to persevere and thrive on our paths forward!

Click here to register now:

 

Click here to view and download an up-to-date PDF of our full Summit Agenda. New speakers and sessions will be added each week, so be sure to check back before finalizing your Summit plans.

Each year, dozens of exhibitors in the rare disease space congregate at the Summit to provide patients with information, tools and resources to help them along their journey. If you’d like to register as an exhibitor, click here. Space is limited so be sure to register ASAP.

We’re so glad you are joining us at the Summit! We’ve put together a helpful list of places to stay, directions, and everything else out-of-towners need to know to plan their trip. Click here for a comprehensive Summit travel guide.

Can’t attend the Summit in person? Don’t worry, you can view the event on Livestream! Click here to register.

 

🎤 Interview Archive with Mary O’Connor aka MaryO, Cushings-Help.com founder

 

As part of this year’s Cushing’s Awareness Challenge, I’ve decided to share our Interview Series again since there was lots of great info in there.

The series is still going on, so if you’d like to be a part of this, just let me know.  You can fill out this form and check off that you want to do an interview – Add Your Bio

There are currently 89 interviews in our series.  This is the first one:

Interview with Mary O’Connor (MaryO), founder of Cushings-Help.com and 20-year pituitary Cushing’s Survivor. Robin (staticnrg) hosted.

Listen at http://www.blogtalkradio.com/cushingshelp/2008/01/03/mary-oconnor-aka-maryo-cushings-helpcom-founder

Some of the comments:

This is the first podcast I have listened to. How wonderful to hear your voices! Thank you Mary for sharing your story and for Robin for being the perfect host. This is a wonderful way of hearing about many of our journies with this awful disease – just brilliant!

Great topic……more awareness is needed as I’m convinced this is under-diagnoised vs. uncommon!!

The information age and innovative thinking meets new medical needs

Great show. informative and potentially life saving

 

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🦓 From a Past Blogging Challenge.

Since not too many people signed up this year, I’m going to be reposting some past Blogging Challenge Posts:

From Danielle’s Blog at http://www.lifewithcushings.com/

Today, I’m going to be talking about my Cushing’s story, which still continues, even 8 years after I was diagnosed.

I remember the moment I realized something wasn’t right.  My mom was taking me to the mall, because none of my jeans fit me anymore.  She was talking about how she wished I would try to lose weight, because she has been overweight most of her life, and didn’t want that for me.  But, I needed pants to wear to school, so I bought another size up.  I remember thinking, nothing has changed.  I didn’t eat more, or less, I hadn’t stopped any activities.  Maybe this was just my metabolism slowing down.

 

Read more here: http://www.lifewithcushings.com/

 

🦓 Day 1: Cushing’s Awareness Challenge 2018

April is always Cushing’s Awareness Challenge month because Dr. Harvey Cushing was born on April 8th, 1869.

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.


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:

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