Wear a Zebra Pin to Celebrate Rare Disease Day!

There is a saying in the medical community, and a rule by which most doctors live. It goes like this: “If you hear hoof beats, think horses not zebras.” This is what is known as Occam’s Razor. Occam’s Razor is a theory that states the simplest answer is usually the correct one. The majority of the time, this is not only a logical rule to live by but also a practical and responsible one.

This way of thinking helps doctors make healthcare decisions. Rather than exposing a patient to painful and invasive diagnostic tests that are unnecessary, they look at the most probable cause. They look for the source of the issue and limit their testing to that. This saves the patient both time and money.

Makes sense, right? The problem is that every now and then, those hoof beats are actually made by a zebra instead of a horse. For those patients, Occam’s Razor is a hindrance to their diagnosis and treatment.
This age-old saying inspired the rare disease zebra pin ribbon. Rare disease patients have affectionately adopted and appropriated zebra stripes to represent their cause.

Raise Awareness About Rare Disease Awareness Day with a Zebra Pin

Rare diseases get little attention. This includes the medical community and drug manufacturers. It’s not that people actively ignore rare diseases. It’s just that most people have either never heard of the rare disease condition or don’t understand it. Even most doctors do not typically see cases of the more common rare diseases.

A physician may go his or her entire career having never seen or heard of some of the diseases classified as rare diseases. This is especially problematic when trying to gain visibility in the rare disease community. Raising awareness and money to support a cause that is rarely diagnosed is difficult. Or, for a disease that has no celebrity spokesperson. Further, most people have never and will never be personally affected by a rare disease. All in all, this makes raising awareness a difficult task.

Rare Diseases Lack Research and Funding

This leaves many patients with rare diseases in a difficult position. Treatment options are often limited because of a lack of research. Development of drugs are often lacking to treat a disease. In addition, patients may suffer because of a lack of experience their doctor has in treating their condition. There are many obstacles that rare disease patients face on their personal health journey.

What is a Rare Disease? So, Why Observe Rare Disease Day?

Let’s talk about what defines a rare disease and why it’s important to wear a zebra pin. In the United States, a rare disease is considered any disease that affects less than 200,000 people. That sounds like a lot. But, when you consider there are over 325 million people in the U.S., it really isn’t very many at all. There are about 7,000 rare diseases. With over 7,000 different rare diseases, it’s no wonder that it’s so hard for people to get a rare disease diagnosis. Doctors typically focus on the diseases they are most likely to encounter. This is why it has fallen to the patients themselves to become advocates and raise awareness for rare diseases.

Here’s the Interesting Part

But here’s the interesting part: Because there are approximately 7,000 different kinds of rare diseases, the number of people in the population diagnosed with one is actually pretty high. It is estimated that around 1 in 10 people in the United States has a rare disease. 50% of rare disease patients are children. So, here we are… with this huge population of people who are unrepresented or underrepresented in the mainstream medical community. What these patients need is a correct diagnosis, good doctor, and medicines to treat their disease. Yet it is a struggle to get all three. This is especially true for children who cannot articulate their symptoms well and cannot advocate for themselves.
(Disclaimer: statistics vary by country.)

You can find an extensive list of Rare Diseases at NORD. You can find an extensive list of genetic diseases at Global Genes.

Rare Diseases and Genetic Diseases – Zebra Pin vs. Blue Jeans Pin

Many rare diseases are also genetic diseases. This has created a great deal of confusion when it comes to an appropriate awareness ribbon color. Should you pick the zebra awareness ribbon for rare diseases or the blue jeans awareness ribbon for genetic diseases? This comes up a lot. The truth is that you can use whichever awareness ribbon you prefer. Around 80% of rare diseases are genetic.

As a result, some rare diseases have organizations that have been able to raise enough awareness to be more visible than others. These diseases typically have their own special awareness ribbon outside of the zebra awareness ribbon. They have become the bigger fish in the small pond.

I bring this up for a couple reasons. First, raising awareness for each of these diseases is crucial in being able to treat and potentially cure them. It is also likely that a lot of these diseases may have shared treatments, and understanding one may lead to a breakthrough in another. It’s a “one for all, and all for one” situation. Second, an awareness ribbon is a surprisingly powerful way to do that. Also, people tend to empathize with a cause when they can put a name or face to it. People are generally good. They want to help. But sometimes it’s hard to become invested in a cause that you don’t understand when you can’t imagine the people affected by it. Personalized awareness ribbons are a great way to overcome that.

Wear a Zebra Pin on Rare Disease Day

Another way the rare disease community raises awareness is with Rare Disease Day. This day is held annually on February 28. Everyone under the rare disease umbrella comes together to raise awareness and share their stories and wisdom. They also offer tips and tricks, and raise money for research and development to advance treatment options for patients.

Fun fact about Rare Disease Day

Rare Disease Day is held every year on February 28th. February 28th was chosen for a very specific reason. February 28th is the last day of February… most of the time. The first ever Rare Disease Day was held in 2008 on February 29th, also known as leap day. They held Rare Disease Day on a day that only comes around every 4 years. In other words, on a rare day. Since then, Rare Disease Day has been celebrated on the last day of February, which is usually the 28th.

Participating in Rare Disease Day – Wear a Zebra Pin

There are lots of things you can do to participate in Rare Disease Day. Patients and individuals can sign up to host an event to raise awareness or a fundraiser. Remember the ice bucket challenge? Well, Rare Disease Day has a similar viral campaign. People participating in Rare Disease Day paint their faces and post photos of themselves on their social media accounts. They use hashtags #RareDiseaseDay and #ShowYourRare. This face paint social media campaign is a way to show support, raise awareness, and share your story. You can also upload your photo directly to their website.

Raise Awareness for Rare Diseases – Be an Advocate!

Sharing your story can have a huge impact on the people who identify with your story. When I was young, somebody told me that I should be open about my health and my journey because you never know how much someone may need to hear what you have to say. It always stuck with me. As I got older, I realized how true it it. There have been a handful of moments in my life when somebody said something that resonated so deeply within me that it actually changed my perspective and my life. They weren’t even anything particularly insightful. They just happened to be what I needed to hear at that moment to feel validated and inspired.

Become an Advocate

Becoming an advocate is making the decision to put yourself out there in hopes that you may help others. Being an advocate can be on a personal level, by educating those around you, or on a public level, by sharing your story with the world. There is no wrong way to advocate for yourself and others. I encourage everyone on a personal health journey to share their story. The benefits are far-reaching, for you and for people you may not even know. Nothing will make you feel more supported, reassured, and understood than talking to a community of people who have dealt with something similar to your experiences. And, like I said, you never know how your words may impact someone else.

A Great Quotation

On that note, I’m going to wrap up today’s blog. I’d like to leave you with a quote that I stumbled across on the Global Genes website, which is an organization for genetic diseases, many of which are rare diseases.

“When “I” is replaced by “we” even illness becomes wellness.”
-Sushan R. Sharma