Editor’s Note: Chronic conditions and rare diseases don’t discriminate, Patient Worthy and its partners are interested in amplifying the voices of those from all identities and backgrounds. If you have a journey to share, click here to learn more about how your voice can help spread awareness and inspire individuals from all walks of life.
As you may already know, Rare Disease Day is approaching on February 29th! The last day of February is recognized every year as a day to help spread awareness about the medical challenge of rare disease across the world.
In the United States, at least 25-30 million people are living with a rare disease. Many rare diseases are genetic and 95% of them have no treatment options. Other challenges faced by people living with rare diseases include:
- Delayed or lack of diagnosis
- Little to no medical research or drug development
- Feelings of isolation or being ‘left behind’ in the health system
- Very high costs for drugs and treatment
The zebra, and zebra stripes in particular, have become an international symbol for rare disease around the world in recent years. This is partially because each individual zebra has a unique pattern of stripes on its body, a metaphor that highlights the uniqueness of each rare disease and each patient. The zebra was also adopted because of a quote from Dr. Theodore Woodward, a famed American medical researcher, that is often used in medical schools to teach the diagnostic method:
“When you hear hoofbeats, think horses, not zebras.”
In this metaphor, medical students are encouraged to assume the most common explanation (in this case, the horse) over a less typical one (the zebra) in diagnosis. While this is generally a useful rule of thumb, it overlooks that fact that there ARE medical zebras out there, the rare disease patients!
To help play our part this year and spread rare disease awareness, Patient Worthy is working on a Rare Disease Day initiative to “share your stripes.”
We are calling on everyone living with a rare disease who is interested in raising awareness to send in a photo wearing any zebra stripe outfits, accessories, artwork, or really anything that symbolizes your rare disease or your relationship with your rare disease. You will have the opportunity for your submissions to be shared across Patient Worthy’s social media accounts, such as X, Instagram, Facebook, or TikTok in February.
Check out some of the fantastic submissions that we’ve received so far:
