The last day in February is set apart as Rare Disease Day!!! Why? Because every four years, the last day is the 29th of February, the rarest day of all!
The symbol for Rare Disease Day is a ZEBRA! Want to take a guess why?
If someone hears hoofbeats approaching from behind, they automatically assume it is a horse. When individuals with rare diseases go to the doctor, oftentimes the doctor will assume their condition is due to a more common diagnosis, leading to the "Diagnostic Odyssey" during which families flit from one doctor to another, searching for answers that never seem to come.
Other people say that the symbol of a zebra shows that just as no two zebra's stripes are exactly the same, so are no two diagnoses exactly the same. Every case is unique.
Show your support for the members of the rare disease community by doing one or more of the following:
1. Wear zebra print and take a picture!
2. Post on social media explaining why you #careaboutrare
3. Take time to learn about a rare disease today! Most affected individuals welcome genuine questions. We want to raise awareness, and are not embarrassed by people asking us to help them understand!
4. Donate to a rare disease based non-profit. I always choose the SATB2 Gene Foundation!
5. Serve someone with a rare disease today. Bring them a meal or treat, write them a note expressing why you appreciate them, or meet up to talk! We all need friends, and having a rare diagnosis can feel lonely.
Whatever you choose to do, choose kindness and inclusion!
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