Rare Disease Day 2019

Today, February 28th, is International Rare Disease Day. 

What is a rare disease?

The answer to this question varies depending on where in the world you live.

If you live in the United States like I do, in order for a disease to qualify as rare, less than 200,000 people are affected by the illness at any given time. This definition comes from the Orphan Drug Act of 1983.

If you live in the UK (United Kingdom), in order for a disease to qualify as rare, less than 1 in 2000 people must be impacted. This means that some illnesses that are rare in the UK are not rare in the United States.

There are over 7000 rare disease that impact the lives of 25,000,000-30,000,000 patients across just the United States. If you crunch those numbers… 1 in 10 Americans is suffering from a rare disease and more then 50% of those Americans are children.

Unfortunately, these rare diseases often take months, if not years to properly diagnose because symptoms that overlap with other more common illnesses. This often results in a misdiagnosis. Even worse? Misdiagnosis can result in patients receiving the wrong treatment.

Why do we need Rare Disease Day?

Rare Disease Day takes place globally on the last day of February every year and the goal is to raise awareness about rare disease and how they impact our daily lives.

By raising awareness we help increase knowledge which helps increase funding which helps increase research which helps increase treatment options.

According to rarediseases.org, 5 of the 9 illnesses that I struggle with daily are considered rare:


Idiopathic Intracranial Pressure

Addison’s Disease (AKA: Primary Adrenal Insufficiency)

Ehlers-Danlos Syndrome


And I can attest to the fact that it can take months if not years to get a proper diagnosis and often part of that process involves receiving a misdiagnosis or two. I’ve experienced being misdiagnosed twice, almost three times in the last three and a half years alone.

You can read more about my journey by navigating to the top of the page and visiting the medical history tab.

For more information on Rare Disease Day visit www.raredisease.org


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s