Tuesday, April 26, 2022

Blog 1: The Beginning - Definitions and Statistics

Hello! My name is Jonna Crocker, and I am a senior in high school. This is the first of 6 blogs that will discuss the injustices for rare disease patients and what we can do to make a difference!

So to start off, what is a rare disease? I will be sharing some definitions, statistics, and real-life stories to help gain a better understanding. 

A rare disease is defined as a disease or condition that affects less than 200,000 people. Now, that sounds like a super large number. But, to put it into context, there are 7.753 billion people in the world. Out of all these people, less than 200,000 will have a certain rare disease!

There are over 7,000 known diseases in the United States, making a “rare disease” more common than you might think. There are 30 million people in the United States that have been diagnosed with a rare disease, making up a large proportion of the population. It is even rumored that if you put every single person with a rare disease in the same country, it would be the 3rd most populous country in the world. Although the diseases are rare, the amount of people enduring this journey is astounding. 

Before I move on, I want you to take a moment to think. Do you personally know anyone with a rare disease? A family member, friend, or significant other? If you answered no to this question, you are most likely wrong. 1 in 10 people have a rare disease, and many choose not to share it.

Now, why is this cause so important to me? To answer that question, I have a rare disease myself. You cannot tell just from looking at me, but I have a rare gastrointestinal disease that impacts my daily life. Over the past 7 years, I have had feeding tubes, a gastric neurostimulator, and endured many surgeries and treatments for my condition. But on the outside, you would never know unless I told you. THIS is why it is important to raise awareness. THIS is what we do it for.

My next 5 blog posts will be discussing all aspects of the rare disease world and the flaws that we are fighting to fix: lack of research, quality of care, economics, insurance discrimination, public policy, and awareness to the public. I hope that you stick with me to learn more about the rare disease journey, and what YOU can do to make a difference.  

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