Why the Zebra?
You may have noticed that the Ehlers-Danlos syndrome community is often associated with the zebra (their stripes can often be seen on social media, awareness raising materials, etc.) and wondered, why?
The following phrase is routinely told to medical students throughout their training:
“When you hear hoofbeats, think horses, not zebras.”
In medicine, the term “zebra” is used in reference to a rare disease or condition. Student doctors are taught to assume that the simplest explanation is usually the best, so as not to go around diagnosing patients with all sorts of exotic illnesses or disorders that are highly unlikely. Common disorders (i.e. the horses) are what doctors should expect to encounter.
Unfortunately, doctors can sometimes fail to remember that 'zebras' do exist, making finding a diagnosis that makes sense of their symptoms, and treatment to help manage them, can be very difficult for sufferers of rare conditions and disorders.
A survey of 1,203 UK patients with a rare disease found that 71% had to see over three doctors and one in 10 had to see more than 10 doctors, before getting a final diagnosis – with the average rare disease patient seeing five doctors. Over half (52%) said they had been given an incorrect diagnosis before receiving their final diagnosis. The average number of misdiagnoses was three.
(Rare Disease UK 2016)
Many types of Ehlers-Danlos syndrome are considered rare in the medical world, and so those affected often consider themselves 'medical zebras'. Although the hypermobile type of EDS is no longer considered a rare type, it still forms part of the EDS spectrum and is still rarely diagnosed.