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