Cushing’s Awareness

The EPIC Foundation proudly works in alliance with Janine Gilbert, founder of Cushing’s Awareness. Cushing’s Awareness is a site dedicated to promoting the advocacy of Cushing’s patients and increasing awareness of Cushing’s Syndrome. To learn more information about this affiliate, you can go to www.facebook.com/cushingsawareness/

Together, We are EPIC!

 

A message from our Affiliate:

 

Cushing’s Awareness’ public Facebook page was established in 2011 with one primary objective in mind:

If I could just tell even one person about Cushing’s and save her or him from the unnecessary pain of having no idea what’s wrong and being fat-shamed or misdiagnosed it would be successful.

 

I created this page a few years after my largest surgery on my Aorta. I had walked around with extremely intense Cushing’s Syndrome (by way of cortisol producing adrenal tumors) along with extremely intense Conn’s Syndrome (by way of aldosterone producing adrenal tumors) for several years. I had very irregular menses since my first cycle at about the age of 12. At the age of 18 or 19 I started with intense anxiety and depression and impulsivity issues. Shortly thereafter, I gained 150 lbs. (doubling my size in less than a year) in what seemed to only be my stomach and upper arms.  Next, came a buffalo hump, moon face, big purple striae, weakness and fatigue, acne, mood swings, mental fog ( I had to drop out of college), thin skin that bruised easily, difficulty healing, low libido, low potassium and osteopenia. I’m leaving the increase in blood pressure for last because it was so high and I was on so much medication–It just didn’t make any sense. A 19 year old female presenting with blood pressure running 200/95 (on a good day) that was taking enough blood pressure medicine to bring down a rhino? Really? I didn’t know any better.

 

It was the same instructions at every Doctor’s visit:

  1. Watch your diet and start eating better.
  2. You need to exercise.
  3. You’re depressed and need to continue with therapy.
  4. Here’s another blood pressure pill or an increase in one that you are already on.
  5. Come back and see me in 4 weeks.

 

When I look back I’m actually sickened by the way I was treated. It took too many years after for my Doctor to think there might actually be something else going on. That was when he sent me to see a nephrologist. Maybe the high blood pressure was being caused by a narrowing of the arteries to my kidneys, he said. The nephrologist ordered a scan and those results changed my life forever. Not only did the scan show a very large Abdominal Aortic Aneurism, but a Dissection as well. The Doctors acted immediately to investigate and transported me to a top notch University Hospital in the City. I’ll never forget the look of horror on my Endocrinologist’s face as he took one look at me after barely scanning my chart: “You have Cushing’s”, he said. To which I replied “what is a Cushing?”

 

It was an extremely long and unnecessary road of surgeries and irreversible damage after that. It beat me down for a good while. Then one night, February 12, 2011, I decided to create Cushing’s Awareness. I hope that I can help people avoid the horrors I faced and still face every day. And most of all, no-one should have to feel all alone. I’m just a click and a few keystrokes away. Remember that.

 

Your Friend and Ally in Battle,

Janine Gilbert