Myth: “Cushing’s is RARE”, “No one has Cushing’s!”, “It is literally impossible for you to have Cushing’s Disease!”
Fact: We have all been guilty of referring to Cushing’s as a “Rare” disease. I*, myself, say this all the time. In fact, the statistics state that only about 2 in every million people are afflicted with this disease. However, these are documented cases.
In reality, Cushing’s is not as rare as we once thought. The fact is that Cushing’s is just rarely diagnosed! Non-experts tend to not test accurately and adequately for Cushing’s.
With an inappropriate protocol for testing, the prevalence of accurate diagnoses decreases. Cushing’s experts DO understand how extensive and difficult the diagnostic process is, so they tend to be more deliberate and thorough when exploring possible Cushing’s in their patients. Cushing’s patients who cycle also have to be more persistent in asking for adequate testing so that they are appropriately diagnosed.
The following video is an accurate portrayal of what many patients experience when trying to get help for their symptoms:
Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)
Information provided by (Responsible Party):
National Institutes of Health Clinical Center (CC) ( Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)
Brief Summary:
Background:
The pituitary gland produces hormones. A tumor in this gland can cause it to produce too much of the hormone cortisol. Too much cortisol in the body causes Cushing disease. This disease causes many problems. Some of these problems might persist after the disease is cured.
Objective:
To find out the long-term effects of exposure to high levels of cortisol during childhood and adolescence.
Eligibility:
People ages 10-42years who were diagnosed with Cushing disease before age 21 and are now cured and have normal or low cortisol levels
People related to someone with Cushing disease
Design:
Participants will be screened with a medical history.
Participants will complete an online survey. This will include questions about their or their child s physical and mental health.
All participants will be seen at 5 -year intervals after cure of Cushing disease (5yr, 10yr, 15yr, 20yr (last visit))
Participants who have a relative with Cushing disease will have a medical history and blood tests or cheek swabs.
Participants who have the disease will have:
Physical exam
Blood tests
Cheek swab
DXA scan: A machine will x-ray the participant s body to measure bone mineral content.
For participants who are still growing, a hand x-ray
Participants with the disease may also have:
Hormone stimulation test: Participants will get a hormone or another substance that will be measured.
Serial hormone sampling: Participants blood will be measured several times through a thin plastic tube in an arm vein.
Urine tests: Participants urine may be collected over 24 hours.
MRI: Participants may have a dye injected into a vein. They will lie on a table that slides into a machine. The machine will take pictures of the body.
“Give yourself, your condition, or your health focus a mascot. Is it a real person? Fictional? Mythical being? Describe them. Bonus points if you provide a visual!”
Our “Official mascot” is the zebra.
Our mascot
In med school, student doctors are told “When you hear hoofbeats, think horses, not zebras“.
According to Wikipedia: “Zebra is a medical slang term for a surprising diagnosis. Although rare diseases are, in general, surprising when they are encountered, other diseases can be surprising in a particular person and time, and so “zebra” is the broader concept.
The term derives from the aphorism ‘When you hear hoofbeats behind you, don’t expect to see a zebra’, which was coined in a slightly modified form in the late 1940s by Dr. Theodore Woodward, a former professor at the University of Maryland School of Medicine in Baltimore. Since horses are the most commonly encountered hoofed animal and zebras are very rare, logically you could confidently guess that the animal making the hoofbeats is probably a horse.
A zebra cup my DH bought me 🙂
By 1960, the aphorism was widely known in medical circles.”
Why? Because those of us who DO have a rare disorder know from personal experience what it feels like to be dismissed by a doctor or in many cases, multiple doctors. Many physicians have completely lost the ability to even imagine that zebras may exist! Cushing’s is too rare – you couldn’t possible have that. Well… rare means some people get it. Why couldn’t it be me?
Although one of my signature images has a zebra, many have rainbows or butterflies in them so I guess that I consider those my own personal mascots.
I have a special affinity for rainbows. To me, a rainbow is a sign that things are going to be ok.
Years ago, our little family was in Florida. I felt guilty about going because my dad was terminally ill with his second bout of colon cancer. I was worried about him and said a little prayer for him.
I was lying on the beach while DH and our son were in the ocean and I looked up and saw a rainbow. It was a perfectly clear, sunny afternoon. I even called the people out of the water, in case it was something I wanted to see that didn’t really exist. They saw it, too.
Where in the world did that rainbow come from, if it wasn’t a sign that everything would be ok?
Butterflies are something else again. I like them because I would like to think that my life has evolved like a butterfly’s, from something ugly and unattractive to something a big easier on the eye.
My Cushie self was the caterpillar, post-op is more butterfly-ish, if not in looks, in good deeds.
For as long as I can remember, I’ve loved butterflies for their beauty and what they stood for. I’ve always wanted to shed my cocoon and become someone else, someone beautiful, graceful.
One of my first memories as a kid was knocking on the back door of my house and when my mom answered, I’d pretend to somehow be an orphan, looking for some kind person to take me in. And I would try to be that different child, with new habits, in the hopes that my parents would somehow think better of me, love me more as this poor homeless kid than they did as their own.
The butterfly was trying to emerge but it never got too far. Somehow, I would slip into my original self and be a bother to my parents.
