Since being diagnosed with Cushing’s, I have the privilege of meeting some pretty amazing and courageous people through a few online support groups on Facebook. Let me tell you these people are truly extraordinary and so strong. They give me hope that I can beat this and get back to living a healthy life again.
One of those people is Dr. Karen Thames. She reached out to me and introduced me to a few of the Facebook groups. Karen herself was diagnosed with Cushing’s. In the Cushing’s community she is God sent. Not only has she fought herself. She is an advocate for other’s and is raising awareness of this rare disease. Through Karen, I learned of an interesting fact as to why the “Zebra” is a symbol in the Cushing’s world. Let me share the metaphor with you. I found it quite fascinating myself.
“Zebra” is a term that is used to describe a surprising diagnosis. It derives from the saying “When you hear hoof beats behind you, don’t expect to see a Zebra”. Dr. Theodore Woodward, a former professor at the University of Maryland School of Medicine in Baltimore, coined this term in the late 1940s. He explained that since horses are the most commonly encountered hoofed animal for most people and zebras are hoofed animals that are less likely encountered; one would naturally guess that the hoof beats belong to a horse and not a Zebra. By 1960, this metaphor was widely known amongst medical circles. (From Wikipedia, the free encyclopedia, 2013)
This phrase continues to be drilled into the minds of Physicians in training:
“When you hear hoof beats, think horses, not zebras.”
So, in the medical community the term “Zebra” is universally understood as a reference to a rare condition/disease. Physicians are taught to assume the most likely explanation of the condition and therefore miss more unlikely explanations of the disease. In addition, Physicians are known to be uncomfortable with diagnosing patients with “exotic” diseases that are unlikely.
Ironically, this term ZEBRA has been adopted by communities of patients with rare disorders such as Cushing’s Syndrome, Adult Human Growth Hormone Deficiency, Panhypopit, and other rare diseases. Why? Because those of us who DO have a rare disorder know from personal experience what it feels like to be dismissed by a physician or in many cases, multiple physicians. Metaphorically, many physicians have completely lost the ability to even imagine that zebras may exist!
“It is frustrating indeed, to spend years being shuffled from specialist to specialist, seeking diagnosis and treatment for a condition that no one can seem to identify.” (www.medicalzebras.org, 2013)
We have started a Zebra movement. We call ourselves the “Zebra Crew”! We recognize that this is a term that represents those of us who have these RARE disorders that can go undiagnosed for many years, on average between 3-7 years! However, Zebra is not a weak term! It is a term that acknowledges how strong we are, brave, courageous, beautiful. We bond through the recognition that we have all endured being misidentified as horses!
Now for a little humor to add to my situation… For the past few years, I have been “eyeing” a pair of Zebra pajamas at Target every year, at this time of the year. They are not your normal adult pajamas. They are full body, footie Zebra pajamas. Every year, I just kept telling myself, “those are not a necessity, you don’t need them”. This year, with this new revelation of the Zebra significance to the Cushing’s community, I am breaking down and buying them.
I guess after all, I was destined to be a Zebra.
I hope these pictures make you laugh. They sure made me laugh at myself!!
I have found that laughing is great therapy! So feel free to laugh away!!
Thank you for sharing the story of the Zebra and how it relates to the Cushing’s world, Karen!!
To all of you reading this, Karen has been such an inspiration to me. When I am back to feeling healthy again and have more energy, I fully intend on advocating and raising awareness like Karen does. Karen is the type of advocate I aspire to be for the Cushing’s community. I CAN. I WILL.
Suffering through this horrible disease is not easy; however, I believe God is putting me through this for a reason. I may not fully understand it yet, but I truly believe God has a purpose. God is working through me.
“Trust in the Lord with all your heart
and lean not on your own understanding
in all your ways submit to him,
and he will make your paths straight”
Like I mentioned above, Karen is an advocate and is raising awareness of Cushing’s. She is currently in the process of creating a documentary to educate others on the disease and what people go through battling the illness. Here is a link to the Facebook page, where Karen will be keeping people updated on the progress of the documentary:
Please take a minute to go “like” the Battleground Diagnosis: The War to Survive Cushing’s Disease Facebook page, and keep an eye out for updates!!
Thank you all!!