Listen as Monica (Monicaroni) talks about the challenges she’s faced maintaining her music career while in testing and treatment. Monica was diagnosed with Cyclical Cushing’s. She had pituitary surgery in November 2006. An 8mm encapsulated pituitary tumor was removed. Since there was no post-op crash, she also had a BLA in December 2006.
Myth: “Men1 and Men2 are the only genetic causes of Cushing’s”
FACT: This is a Myth. More current research has explored multiple etiologies of Cushing’s. It was once thought that heredity had no influence on the development of Cushing’s Syndrome/Disease and our knowledge was once limited in this sense. Researchers have done more work in terms of exploring genetic factors in the onset of this disease. *~Robin Ess (Cushing’s educator and advocate)
The following causes for Cushing’s have all been explored:
1. Men 1
5. PRKAR1A(protein kinase,cAMP-dependent, regulatory, type I, ? gene)
Cushie Crusader, that’s me…and many others. I think we all have an opportunity to be Cushie Crusaders every time we tell others about our illness, share our story on or offline, post about our struggles – and triumphs – on the message boards, write blog posts in this Cushing’s Awareness Challenge…
I have brochures printed up that I’ll sometimes give to people who look like they might need the info. My husband carries business cards since he’s getting pretty good at recognizing Cushies. Robin made a great information card that anyone can print out and share with others.
When we have prayer time in my handbell practice or choir rehearsals I try to mention issues that are going on in the Cushing’s community. People are slowly but steadily learning about Cushing’s week by week.
A piano student mentioned that a person in a group she is in has Cushing’s, a non-Cushie friend mentioned last week that she had gone with a friend of hers to an endo appointment to discuss Cushing’s.
Get out there and talk about Cushing’s. Let people know that it’s not just for dogs and horses (and sometimes ferrets)!
After you’ve been diagnosed, don’t just forget all about Cushing’s – stick around the boards and help others who are just getting started.
Here’s something I had made for Sue with SuperSue embroidered on the back.