Sunday, April 8, 2012

National Cushing's Awareness Day!

Today is National Cushing's Awareness Day and it is also the birthday of Dr. Harvey Cushing.  He is the Neurosurgeon who first discovered this disease and was considered one of the pioneer's of Neurosurgery in the early 1900's.

What are Cushing’s syndrome and Cushing’s disease?

Cushing’s syndrome is a rare condition that is the result of too much of the hormone cortisol in the body. Cortisol is a hormone normally made by the adrenal glands and it is necessary for life. It allows people to respond to stressful situations such as illness, and has effects on almost all body tissues. It is produced in bursts, most in the early morning, with very few at night.

When too much cortisol is made by the body itself, it is called Cushing’s syndrome, regardless of the cause. Some patients have Cushing’s syndrome because the adrenal glands have a tumor(s) making too much cortisol. Other patients have Cushing’s syndrome because they make too much of the hormone ACTH, which causes the adrenal glands to make cortisol. When the ACTH comes from the pituitary gland it is called Cushing’s disease.

Cushing’s syndrome is fairly rare. It is more often found in women than in men and often occurs between the ages of 20 and 40.

What causes Cushing’s syndrome and Cushing’s disease?

Cushing’s syndrome can be caused by medication or by a tumor. Sometimes, there is a tumor of the adrenal gland that makes too much cortisol. It may also be caused by a tumor in the pituitary gland (a small gland under the brain that produces hormones that in turn regulate the body’s other hormone glands).

Some pituitary tumors produce a hormone called adrenocorticotropic hormone (ACTH), which stimulates the adrenal glands and causes them to make too much cortisol. This is termed Cushing’s disease. ACTH-producing tumors can also originate elsewhere in the body and these are referred to as ectopic tumors.

What are the symptoms of Cushing’s syndrome?

Not all people with the condition have all these signs and symptoms. Some people have few or “mild” symptoms – perhaps just weight gain and irregular menstrual periods. Other people with a more “severe” form of the disease may have nearly all the symptoms. The most common symptoms in adults are weight gain (especially in the trunk, and often not accompanied by weight gain in the arms and legs), high blood pressure (hypertension), and changes in memory, mood and concentration. Additional problems such as muscle weakness arise because of loss of protein in body tissues.

Weight gainInsomnia
HypertensionRecurrent infection
Poor short-term memoryThin skin and stretch marks
IrritabilityEasy bruising
Excess hair growth (women)Depression
Red, ruddy faceWeak bones
Extra fat around neckAcne
Round faceBalding (women)
FatigueHip and shoulder weakness
Poor concentrationSwelling of feet/legs
Menstrual irregularityDiabetes

Information taken from

Since it is National Cushing's Awareness day I find it fitting to go ahead and continue on with my story.  I left off that I was waiting for Dr. Friedman to call me on October 2nd, 2011 and discuss a plan of action for testing and to talk about all my test results.  I expected that I would have plenty of months ahead of me in which I would need to keep testing.

The phone rang and Dr. Friedman asked me how I was doing.  I told him I wasn't doing that great and in fact I felt worse than when I had seen him in June.  He told me he wasn't surprised and then he began telling me about my test results.  He told me I had several tests come back high and that I even had an 11P.M. Salivary test come back pretty darn high.  In all of my testing I have never, ever had a salivary cortisol test come back high.  He said that with all of these results he felt confident that I was ready to move on to surgery.  At this moment I about dropped the phone and then I said "Are you telling me that I have Cushing's Disease?"  His response was "Yes, I do believe you have Cushing's Disease."  At this moment I felt like every muscle in my body turned into gum.  I wanted to scream, cry, dance, you name it, but I had to keep my composure for the rest of the conversation.  Dr. Friedman asked me if I had a surgeon picked out.  I told him I had one in mind, but I hadn't officially made up my mind yet.  He told me to make sure Dr. McCutcheon read the MRI and that when I was ready he would get the referral going.  I thanked him profusely for believing in me and doing what no one else could do in almost twelve years of trying to get diagnosed.  ONE month of testing and I was diagnosed.  October 2nd, 2011.  A day I will never forget.

Once I hung up the phone I began to scream.  Screams of frustration, joy, validation, anger, every emotion from the past twelve years that could be mustered up came out of me at that moment.  My body was literally shaking from the amount of emotion that was pouring out of me.  FINALLY, I had my diagnosis.  I called my parents and let them know it was official.  My mom and sister soon showed up at my door to just hug me.  It was that pivotal moment in time where everything really was going to change.  No more dreaming about it, it was here and it was NOW!

I have Cushing's Disease and no one can ever dismiss me again.

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