What Would Harvey Cushing Do?

My name is Laura, and I AM the face of Cushing’s. Or at least one of many.

I'm a survivor.
I’m a survivor.

Today, April 8th, isn’t just another Wednesday, or “Hump Day” as some people call it. Today (and every April 8th) is Cushing’s Disease Awareness Day.

Cushing’s came about as a diagnosis in 1932, and was discovered by a neurosurgeon named Harvey Cushing:

Dr. Harvey Cushing thanks to a Google image search
Dr. Harvey Cushing thanks to a Google image search

If it weren’t for this man, many people, including myself, would most likely not be alive today. Cushing’s is a rare endocrine disorder that can be fatal if not treated, or if left uncontrolled. Many people go for months or years without getting the correct diagnosis, and the symptoms don’t just get better on their own.

Having been through 3 transsphenoidal pituitary tumor resection surgeries (brain surgery through my left nostril), 1 mega dose of radiation to my brain, a medication trial, numerous doctor and out of town hospital visits, >100 vials of blood drawn, >20 MRIs and CT scans, the collection of several gallons of my urine, 6 weeks of 2x/day saliva collection, and the removal of my adrenal glands, I can comfortably say that I’m now living without Cushing’s. However, getting to this point wasn’t easy or quick, but I made it.

Enjoying my cocoon of blankets and IVs after my 2nd pit surgery
Enjoying my cocoon of blankets and IVs after my 2nd pit surgery

There’s not a whole lot of information out there floating on the interwebs, libraries, doctors offices, or even in the minds of most doctors. Cushing’s is usually just a passing thought for most medical providers, as it’s a rarity that they’ll ever treat someone with Cushing’s. Because it is so rare, there’s also not a lot of research about the disease, nor are there many resources for patients and their families, or people who want to know more about it.

The drug company Novartis has made important strides in making educational materials available for patients living with Cushing’s and for the general public to gain a better understanding of this strange disease. This year, they have themed Cushing’s Disease Awareness Day to ask, “What Would Harvey Cushing Do?”

Well, what would he do?

Novartis also published this short video about Cushing’s Disease 2 years ago for this special day:

As with any disease or condition, it’s important to get a conversation started about it. Whereas rare endocrine diseases and disorders probably aren’t something you’d talk about with your coworkers around the water cooler, why not bring it up? If more people become aware of Cushing’s Disease and all that it entails, maybe more people will be diagnosed in the future. Or even be more assertive with their doctors regarding their own bodies, lives, and health.

Back to my last post regarding the statement “When you hear hoofbeats, think zebras”, it is a rendition in the rare disease community of the phrase “If you hear hoofbeats, think horses not zebras”. That statement is used in the medical world to say that more often than not you’re diagnosing something common (horses) over something exotic (zebras). But in the Cushing’s community, things aren’t always straightforward or black and white. Our cases may be complicated, but our voices deserve to be heard, and our bodies deserve to be treated correctly and healed properly. Also, zebras are phenomenal animals 🙂

Zebras, party of 2
Zebras, party of 2

As you continue about your day today, ask a coworker, friend, relative, spouse, significant other, or any person of your choosing if they’ve ever heard of or known someone with Cushing’s Disease. Let’s talk about this issue, world!

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6 thoughts on “What Would Harvey Cushing Do?

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  1. Hi Laura! I am a friend of your mom and dad! Your blog is fascinating and I learned a lot. I forwarded it to my friend, Denny Lance, a retired ER doc that your mom met when she was visiting here. His mom had Cushings. You have the most beautiful teeth and smile! You should represent Colgate or Crest! Your newest photo with curls is how I remember your mom’s hair at your age….but it almost reached her waist. Keep up with the positive outlook on life! Ginny Knott

  2. Hi, I came across your blog entry while surfing the internet for information on Cushing’s. First off, I LOVE your sense of humor!! I have lived with the majority of the symptoms of Cushing’s for about 15 years. I even had a primary care doc that started the workup, but being an idiot 20-something year old, I never followed up. I have gotten the various diagnoses of PCOS, morbid obesity, depression, you eat too much, you need to exercise more, etc. I can gain 30 pounds in 3 months with not eating abnormally. I topped out at 305. I opted for a gastric bypass (as an aside said bypass was done at Shands where I used to work and yes your neurosurgeon is nice to look at, I used to work with him.) That bypass and the accompanying near starvation was the only way I was able to dump the weight. I had some complications with it and wound up with more belly surgery and a takedown of the bypass. I am now back to gaining weight like I’m preparing for hibernation. I am a nurse, and I think reasonably intelligent, so the fact that I am consulting Dr. Google might seem odd if this were not such a foreign concept to most physicians. I have seen patients that do this and sometimes I just have to groan. However, I have found a lot of information that has confirmed my suspicions. I have progressed to the serious depression, the hypertension and a pretty impressive (at least I think so) buffalo hump. In the last ten years or so, I have developed the ability to have a beard growing contest with my brother (we’re talking shaving twice a day!!). I have spent over $1000 on laser hair removal. That fixes the immediate problem but not the cause, right? Additionally, the only way I can sleep past 4am is to stay up until 2 am. my back hurts and I slouch and am afraid the osteoporosis is beginning to set in. I think all of this put together at the very least merits the initial workup. I am still in the market for a primary care doc that won’t either blow off my concerns or at least will refer me to an endocrinologist. This just might be the answer to what I have always called “my f-ed up hormones”. I am just so tired of being dispatched by the doctor with one of the common diagnoses of hyper-pizza-itis or something.
    Your blog does give me some assurance that I am not crazy (well not as crazy as I think some days) and that I can get past this all.
    I would appreciate any more information that you have, as thus far I have found no one that comprehends how serious this can be. I am pretty sure I am not a hypochondriac but after so many brush offs and feeling so crummy for so long, one does begin to wonder if it is all in my head. Well, if I am right, then it all really is in my head, just not in the way one would think.
    KJT

    1. Hey Kristin! I would like to apologize for not seeing your message until today – I took a blog hiatus. You are not at all crazy, and thanks for reaching out. You will get past all of this – where do you live? I had treatment at Shands in Gainesville, FL, and the Cleveland Clinic in Florida and Ohio. I can recommend some good endos if need be. I hope you’re doing well!

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