What the Heck is... Cushing's??
This was the exact question I asked myself: what is Cushing’s Syndrome? Disease?
How in the world did this happen to me? Where did I get this tumor? Did I grow it naturally? Was it something I did that caused it to develop?
When will this all be over?
(L) Not-so-healthy, pre-surgery, 2015; (R) Almost one year post-op, 2016
These are also the same questions that now flood my inbox from people all over the world, people just like you and I who are dealing with the sudden onset of very powerful and notoriously random symptoms that both they and their doctors struggle to explain.
Cushing’s is a mysterious illness characterized by an excessive amount of cortisol in the human body, also known as hypercortisolism, according to the Mayo Clinic.
“Too much cortisol can produce some of the hallmark signs of Cushing syndrome — a fatty hump between your shoulders, a rounded face, and pink or purple stretch marks on your skin. Cushing syndrome can also result in high blood pressure, bone loss and, on occasion, type 2 diabetes”
Diagram of “Cushingnoid” body, courtesy the Mayo Clinic
In addition to the chart above, the Mayo Clinic also lists the follow symptoms as signs of the disease:
Common signs and symptoms of Cushing syndrome
Weight gain and fatty tissue deposits, particularly around the midsection and upper back, in the face (moon face), and between the shoulders (buffalo hump)
Pink or purple stretch marks (striae) on the skin of the abdomen, thighs, breasts and arms
Thinning, fragile skin that bruises easily
Slow healing of cuts, insect bites and infections
Acne
Signs and symptoms women with Cushing syndrome may experience
Thicker or more visible body and facial hair (hirsutism)
Irregular or absent menstrual periods
Signs and symptoms men with Cushing syndrome may experience
Decreased libido
Decreased fertility
Erectile dysfunction
Other signs and symptoms that may occur with Cushing syndrome
Severe fatigue
Muscle weakness
Depression, anxiety and irritability
Loss of emotional control
Cognitive difficulties
New or worsened high blood pressure
Headache
Increased pigmentation of the skin
Bone loss, leading to fractures over time
In children, impaired growth
It seemed to come out of nowhere for me. And when it hit, I felt like I had no where to turn for support or answers, except for medical resource sites like the Mayo Clinic’s page (thank you all for your information.)
But where do you turn for the personal stuff? Who can you talk to that can understand exactly what you’re going through?
Sadly, rare diseases so often rarely have advocacy groups or even an online network for support. I want to make sure that doesn’t happen to me or my fellow Cushies and their teams.
Full-blown Cushing’s: the day before my adrenalectomy, Aug. 10, 2015
My goal for this blog to shed a much needed light on this disease and the community it impacts. I want to provide resources, conversations, stories and give hope to people who are in the throws of a Cushing’s fight: from getting a proper diagnosis to awaiting treatment to being in treatment to the recovery process.
I want this to be a place for Cushies like me to celebrate our bodies and their battle scars; a place where we laugh together and even let each other cry; a place where we inspire and inform the rest of the world.
I’ll be sharing my story more in-depth every week, with photos for reference. Let’s get real about this journey we’re on! Thank you for visiting and please come back!
(L) Aug. 9, 2020, day before surgery; (R) 5 years post-op, Aug. 10, 2020