Day: April 10, 2019

🕺Cushing’s DanceOff Challenge

MaryO Uncategorized , ,

 

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

🦓 Day 10: Cushing’s Awareness Challenge 2019

MaryO Cushing's Awareness Challenge , , , , , , , ,

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.