International zebra day – international zebra dag

1. 🇩🇰Da jeg var helt ny i ehlers danlos syndrom verdenen og knap nok vidste hvad det gik ud på andet end at det var 3 ord på et stykke papir der var navnet på den sygdom jeg havde og de samme 3 ord der gav mig en forklaring på mit liv indtil da Men samtidig også 3 ord der ville følge mig resten af mine dage men som jeg knap forstod hvad betød eller hvordan skulle udtales. 

Derfor fulgte jeg reumateologens råd og søgte optagelse i en gruppe med andre ehlers danlos patienter på facebook og blev hurtig medlem og kunne derved følge med i hvad de andre delte, hurtigt undrede det mig at der dukkede billeder af zebra’er op i gruppen og andre i gruppe beskrev dem selv som zebra’er og jeg tænkte hvad sker der her? Det vidste sig dog hurtigt at der var en god forklaring på det. Nemlig den at zebraen er maskot for ehlers danlos syndrom fordi ehlers danlos er en sjælden sygdom og lægerne derfor sjældent tænker på den diagnose som det første når de skal finde ud af hvad vi fejler hvilket kan ses lidt på følgende måde 

Du kommer gående og høre hovslag bag dig du træder til side og tænker der kommer en hest…….. du tænker ikke på zebraen for den er jo meget mere sjælden så hvorfor skulle der komme en zebra gående bag dig

Derfor valgte man at bruge zebraen som maskot for ehlers danlos syndrom da vi ofte får andre diagnoser stillet og har lange udredningsforløb inden man når frem til den rigtige mange når at få diagnosen gigt og mange andre led sygdomme og ofte giver det hele først mening når man kommer frem til diagnosen ehlers danlos syndrom. 

🇬🇧When I was completely new to the ehlers danlos syndrome world and barely knew what it was other than that it was 3 words on a piece of paper that was the name of the illness I had and the same 3 words that gave me an explanation for my life until then But at the same time also 3 words that would follow me the rest of my days but as I barely understood what meant or how to pronounce.

Therefore, I followed the rheumatologist’s advice and searched for admission to a group with other ehlers danlos patients on facebook and quick became member and could thus keep up with what the others shared, it quickly surprised me that pictures of zebras appeared in the group and others appeared in group described themselves as zebras and i thought what happens here? However, it soon became clear that there was a good explanation for it. Namely, the fact that the zebra is the mascot of ehlers danlos syndrome because ehlers danlos is a rare disease and the doctors therefore rarely think of the diagnosis as the first thing to find out what is wrong with US. which also can be seen a little at the following way

You come walking and hearing the hoofbeat behind you you step aside and thinking there comes a horse …….. you are not thinking about the zebra for it is much more rare so why should a zebra go behind you

Therefore, we chose to use the zebra as a mascot for ehlers danlos syndrome as we often get other diagnoses and have long investigations before reaching the right diagnoses many is getting the diagnosis of arthritis and many other joint diseases before They gets the right diagnosis and often giving the whole thing first gives meaning when they arrives at the diagnosis of ehlers danlos syndrome.