Cushing's Awareness Challenge, Day 1

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

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.

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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:

https://youtu.be/GRaDr3cPAmE

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

RARE Video Project

Global Genes | RARE Project would like your voice to be heard!

Share your home videos!

We are currently looking for your home videos that illustrate what life is like for rare disease patients and caregivers on this complex and often emotional journey.  This could be an assortment of moments that you’ve captured on your phone, a camera, or a digital recording device.  We want the key moments, the most beautiful, personal moments that represent not only the diseases, but you and your child(ren) as well.

A few examples of what we are looking for in these clips:

Births	In Pain	Overcoming
Birthdays	Sadness	Happiness
Hospital Visits	Loss	Laughter
Medicines	Struggle	Important Events
At Play	Tears	Family

Be creative, think outside the box.   Look for clips that are shot well, with nice light.  Give us variety!  Old footage, new footage, maybe even something your child has shot.  We want personal, private moments.  That is what will send the strongest message.

What are we going to do with this?

We are working with an award-winning filmmaking team to select submissions that will be compiled together to create a visual storyline of the years of your ongoing journey.  This is your chance to share the moments that you see and experience with a global audience.

This is your moment to be heard.

More information at http://globalgenes.org/rare-video-submission-form/

Day Twenty, Cushing's Awareness Challenge

This is one of the suggestions from the Cushing's Awareness Challenge post:

What have you learned about the medical community since you have become sick?

This one is so easy.  I've said it a thousand times - you know your own body better than any doctor will.  Most doctors have never seen a Cushing's patient, few ever will in the future.

If you believe you have Cushing's (or any other rare disease), learn what you can about it, connect with other patients, make a timeline of symptoms and photographs. Read, take notes, save all your doctors notes, keep your lab findings, get second/third/ten or more opinions.

This is your life, your one and only shot (no pun intended!) at it.  Make it the best and healthiest that you can.

When my friend and fellow e-patient Dave deBronkart learned he had a rare and terminal kidney cancer, he turned to a group of fellow patients online  and found a medical treatment that even his own doctors didn't know. It saved his life.

In this video he calls on all patients to talk with one another, know their own health data, and make health care better one e-Patient at a time.

http://www.youtube.com/v/2vejkD0Rl3o

Have You Had A Cushing's Recurrence? Please Help with This Video Project!

Trisha writes: 

Working on a new video with Beth G. as my partner. With Corlum now thrown in the mix, we want to compare the best treatment options for recurring cushings. We want to hear from you about weather you are glad you had a BLA? if you could do it over again, would you? If you had meds available, did you try them first? What challanges do you have on a regular basis because of BLA? Why would you not want a BLA? What do you hope to get out of having a BLA?

We are not looking for the medical side, just the human side. If you would like to participate, message both Beth and myself on the same message. If you have a webcam, we would like to include video into the video and set up an interview.

Remember, its all about Awareness!

 

Beth says:

I'm working on a questionnaire so that everybody can answer the same set of questions. Trisha or I will email it so you to fill out, so can anybody interested please send us your email address? We're interested in you if: 

a) You've had a BLA

b) You're considering a BLA

c) You're a potential candidate but would never consider a BLA

PLEASE REMEMBER: Any information you provide related to a BLA will become public, so if you're not willing to have your thoughts and answers shared with the public (meaning outside of this group in a video that will hopefully go viral on youtube!) then please don't sign up to help with this project!

Feel free to ask us questions! Thanks!!

 

If you want to participate, please email Beth at icybluesnow@gmail.com

Thanks!

Cushing's: A Numbers Game

Trisha Thaens compiled this very moving video of her Cushing's journey.  She says "OK, here is the link. I think it is best watched in full screen (the squarebutton in the bottom right hand corner). I wasn't going to share quite yet, but was asked to because its Rare Disease Day."

 

http://anumbersgame.shutterfly.com/29

Cushing's Blog Alerts updated January 24, 2011

It's Literally Impossible To Have Cushings
By MaryO
Endocrinologists sometimes have a hard time diagnosing cushing's disease. Here is a scene between one concerned patient and her endocrinologists.

http://www. xtranormal.com/watch/8287099.

~~~
MaryO'Note: I found this to be so true. ...
Cushing's & Cancer - http://cushingshelp.blogspot.com/

Does this look like Cushings to you? (Pic heavy) - Cushing's Help ...
Hi everyone please excuse the jammies and messy hair I'm not feeling well this weekend but wanted to get some pics up to see if these are indeed ...

From the Cushings Help Organization,... - http://cushings.invisionzone.com/index.php?showuser=12915

Cushing’s Blog Post

Life with Cushing's: Favorite Cushing's/Pituitary Videos
By Danielle
Danielle: I was officially diagnosed with Cushing's Disease on November 9, 2009, but have suffered with symptoms for almost 10 years. I have had two pituitary surgeries in December '09 and February '10, and recently had a bilateral ...
Life with Cushing's - http://lifewithcushings.blogspot.com/

May 20, 2009 Cushing's Help and Support Newsletter

In This Issue

Welcome to the latest Cushing's Newsletter!

Cushie Bloggers

Upcoming Interviews

Upcoming Meetings

Podcasts

Cushing's on Facebook and Twitter

Media: Follow up to last week

Want to Volunteer?

Robin writes: Adult Onset Growth Hormone Deficiency: Phenotype and Benefits of Treatment

Video: Cushing Syndrome

Clinical Trials

Help Keep The Cushing's Sites Going

The Endocrine System

Endo News: Diagnosing Cushing’s syndrome

Endo News: Cushing’s syndrome (Hypercortisolism) from NLE Review Bullets

Endo News: Back Pain and Cushing's

Endo News: Pituitary-directed medical treatment of Cushing’s disease

Endo News: About Cushing's from OHSU

Endo News: Untreated Growth Hormone Deficiency Contributes to the Phenotype of Patients With History of Cushing's Disease

Robin writes...

New and Updated Bios
New Bio May 16, 2009
Melanie (Melanie W) is from Oklahoma. She has many Cushing's symptoms and has been diagnosed with PCOS and mild hypothyroidism so far.
New Bio May 15, 2009
Shirley (SBett) is from Ronan, Montana. After 6 years her doctor finally found a pituitary tumor on an MRI. She is testing and has high cortisol and growth hormone.
New Bio May 13, 2009
Jodi (Jodi) is from Rochester, Michigan. She had surgery to remove half her pituitary. She is now having issues with adrenal insufficiency.
New Bio May 12, 2009
angelp (angelp) is from London, England. She had her first pituitary surgery in January 2009 and a second in March 2009. She will have an adrenalectomy and radiotherapy to remove the rest of her pituitary tumor.
New Bio May 11, 2009
Sue (Sue) is from Lombard, Illinois. She has many Cushing's symptoms and her cortisol levels are very high but the source of her Cushing's hasn't been found yet.
New Bio May 10, 2009
Kate (kate22) is from Richmond, Virginia. She is not yet diagnosed with Cushing's but she is testing. She has many Cushing's symptoms.
New Bio May 10, 2009
Angie (dermpat) is from Melbourne, Australia. She is not yet diagnosed with Cushing's but is testing for cyclic Cushing's.
New Bio May 10, 2009
Vanessa is from Phoenix, Arizona. She has recently been diagnosed with a pituitary tumor and is looking for an endo.
New Bio May 10, 2009
Rachael (RachaelB) is from Charlotte, North Carolina. She was recently diagnosed with Cushing's and will be having her pituitary tumor removed in August.
New Bio May 4, 2009
Shiloh (Shiloh) is from Fort Collins, Colorado. She is not formally diagnosed. She is trying to manage her symptoms with healthy eating, massage and acupuncture.
New Bio May 3, 2009
Luisa (Luisa) is from Knoxville, Tennessee. She was originally misdiagnosed with PCOS and is testing for Cushing's currently.
New Bio May 1, 2009
Song is temporarily outside of U.S.A. She is not yet diagnosed. Someone at a party saw her buffalo hump and asked is she knew about Cushing's. Her own research says she might have this and testing shows elevated cortisol.
New Bio May 1, 2009
Alisha (gbsawyer) is from Kirksville, Missouri. She is not yet diagnosed but has many symptoms and is seeing a new endo.
New Bio April 30, 2009
Lulu is from Corona, California. She had transnasal surgery 10/2007 and stereotactic surgery 8/2008. Both surgeries have failed. She tried Ketoconozole for a month and ended up in the hospital because the medication was affecting her liver. She is currently doing nothing for her Cushing's.
New Bio April 29, 2009
Melissa (meltizzle) is from Santa Fe Springs, California. She was recently diagnosed with Cushing's and thinks she had it since 2007.
New Bio April 29, 2009
Aly is from Arizona. She has had diabetes for 18 years and is a brand new mom. About two years ago she started getting Cushing's symptoms and is scheduling adrenal surgery.
New Bio April 27, 2009
Patty (pattycakes) is from Cincinnati, Ohio. She has many Cushing's symptoms but doctors are calling her pituitary tumor a Rathke Cleft cyst so she is still trying to get answers.
New Bio April 24, 2009
McCall (McKenzie) is from Fairfax, Virginia. She was diagnosed with central adrenal insufficiency after an ITT (Insulin Tolerance Test) and is taking 15mg of Hydrocortisone a day for the ACTH replacement therapy. She is wondering if it is possible to have both adrenal insufficiency AND Cushing's.
New Bio April 22, 2009
Kirsty (kirstymnz) is from Hamilton, New Zealand. Her doctors couldn't find the source of her ectopic Cushing's. She had a lung nodule but removal didn't help so she had a BLA (bilateral adrenalectomy).
New Bio April 22, 2009
Jeff (akflier) is from Palmer, Alaska. He was diagnosed with pituitary Cushing's in July 2008 and had surgery in August 2008.

New and Updated Bios

Followup on Erin's Twittered Pituitary Surgery

 

Read the "tweets" during surgery here

Cushing Syndrome Video

This video explains the complete workup of Cushing Syndrome, the causes, the diagnosis, and the full management.