“Z” is for Zebras…
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. By 1960, the aphorism was widely known in medical circles.
So both rare diseases and early age onset of common diseases could be defined as Zebra’s and doctors are told to look for horses not zebra’s. So a good family health history that showed either a rare disease or early onset of common disease would provide the doctor with an incentive to look for the ZEBRA instead of the horse.
At this point in time they have identified 7,000 rare diseases. To be qualified as a rare disease there has to be less than 200,000 individuals in the US diagnosed with that specific disease and can at times number less than 100.
I have been looking for the statistics on the number of adopted individuals in the US and cannot find them but remember it is approximately 2%. Adopted individuals from the Baby Scoop Era is estimated to be approximately 6 Million. None of us from the BSE had great starting family health histories and now that we are older those histories, even the good ones are useless. Those who have found their families may only be able to obtain their maternal family health history, although some is always better than none.
So how likely is it that two adult adoptees from the BSE, living in different countries would find each other on a message board, become friends and find out we had both be diagnosed with a rare disease? And would then start a blog together? Yes – both of us have been diagnosed with a rare disease so we are Zebra’s to the medical world. One got her diagnosis relatively early – my diagnosis came after being mis-diagnosed with a common disease and then surviving two back to back life threatening events, and then the diagnosis only happened because the specialist was willing to entertain the idea of a Zebra, not a horse.
But when I read different adult adoptee blogs I find we are not the only ones with rare diseases or being diagnosed at an early age for a common disease.
So how rare is it for an adoptee to be diagnosed with a rare disease or at an early age for a common disease?
I think this type of study would actually be beneficial study on Adoptees…
If you are an adoptee that falls into either category, i.e. a ZEBRA – please leave a comment. Should we not be working together to make the adoption world aware this is a bigger problem than anyone realized – for the next generation of adoptees? Because we know there will be more generations of adoptees…