🕺Cushing’s DanceOff Challenge

 

Welcome to our #DanceOff challenge video!

The rules are simple – Play or Pay (or share! 😉 )

If you want to donate to one of the groups we’re highlighting, here’s the list! —

— April Awareness —–

1. Cushings: Cushing’s Help http://cushings-help.com/

2. Adrenal Insufficiency: NADF https://www.nadf.us/

3. Autism: Autistic Self Advocacy Network! https://autisticadvocacy.org/

4. Mental Health: National Suicide Prevention Hotline https://suicidepreventionlifeline.org/ National Alliance on Mental Illness https://www.nami.org/

—– May Awareness —–

5. Chronic Pain: Chronic Illness Advocacy And Awareness Group (CIAAG) https://www.ciaag.net/

6. Fibro: National Fibromyalgia And Pain Association https://fibroandpain.org/

7. EDS: Ehlers Danlos Society https://www.ehlers-danlos.com/

Or to help us help others, you can donate to The EPIC Foundation: http://www.EPICtogether.org

🎤 Mary O’Connor (MaryO) second archived interview with Robin Smith (staticnrg)

 

Robin had Cushing’s for over 20 years, at least. Of course, no one figured it out or even put two and two together until her new PCP whom she found in 2004 said “endocrine”. She didn’t figure it out, either, but at least Robin had a piece of the puzzle and she found cushings-help.com. Robin immediately went into denial and left for several months until she got so sick she knew she had to have help. She had originally sought this PCP because she had been going to all sorts of doctors.

Listen at http://www.blogtalkradio.com/cushingshelp/2008/03/07/symptoms-and-diagnosis-part-2-cushings-message-board-members

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🦓 Day 10: Cushing’s Awareness Challenge 2019

The above is the official Cushing’s path to a diagnosis but here’s how it seems to be in real life:

Egads!  I remember the naive, simple days when I thought I’d give them a tube or two of blood and they’d tell me I had Cushing’s for sure.

Who knew that diagnosing Cushing’s would be years of testing, weeks of collecting every drop of urine, countless blood tests, many CT and MRI scans…

Then going to NIH, repeating all the above over 6 weeks inpatient plus an IPSS test, an apheresis (this was experimental at NIH) and specialty blood tests…

The path to a Cushing’s diagnosis is a long and arduous one but you have to stick with it if you believe you have this Syndrome.

 

⁉️ Cushing’s Myths and Facts: “All types of Cushing’s are the same”

Myth: “All types of Cushing’s are the same”

myth-busted

Fact: In the words of our dear friend and advocate, Robin Ess, “There are many genetic varieties with quite a few discovered in the past couple of years. Plus, there are several types such as adrenal, ectopic, and pituitary. And so on”….Amazingly, some doctors do not realize that there are different varieties of Cushing’s and that the symptoms can come from a different source.

For instance, a doctor might rule out a pituitary tumor and completely dismiss the patient, even with biochemical evidence of Cushing’s. That doctor, instead of dismissing the patient, should thoroughly look for other potential sources, such as an adrenal tumor, or yet another source. Did you know that tumors on one’s lungs can even cause Cushing’s? Most people don’t know that.

For more information about the different types of Cushing’s, please read: http://www.mayoclinic.org/diseases-conditions/cushing-syndrome/basics/causes/con-20032115

Another great article regarding ectopic Cushing’s can be found here: http://www.nejm.org/doi/full/10.1056/NEJM199809243391304#.VH-80v5f2s8.facebook

MaryONote: Folks might be interested in listening to this podcast episode with Jayne, a Cushing’s patient who had pituitary surgeries and a bilateral adrenalectomy before finding the true source of her ectopic Cushing’s – lung tumors.

http://www.blogtalkradio.com/cushingshelp/2008/01/31/tentative-date-an-interview-with-jayne-cyclical-cushings-patient

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