Suffering from a chronic disease is hard, but suffering from one that a lot of doctors haven't heard of nor learned about brings a whole new meaning to complicated.
Tuesday, February 28, 2017 was the 10th annual World Rare Disease Day. For those of you who don't know what this is, Rare Disease Day is an annual observance to raise awareness for rare diseases and improve access to treatments and medical representation for individuals and their families. This day was created because treatment for many rare diseases is insufficient, as are the social networks to support individuals with rare diseases and their families. On this day, people from all around the world come together to raise awareness of rare diseases and the impact of those who are affected.
I recognize Rare Disease Day because I have spent nearly the last 4 years impacted by one. In 2013, I was diagnosed with Ehlers-Danlos Syndrome (EDS) . It is estimated that every 1 in 5,000 people will be diagnosed with this in their lifetime. A disease is considered rare in the United States if it affects fewer than 200,000 people and they have seen over 10 specialists, one of which has probably misdiagnosed them at one point.
Well, this has happened to me. Over the past 4 years, I have seen more doctors than the average person will have to encounter in their lifetime because there hasn't been proper awareness about my disease. This is something that needs to change.
There are thousands of people around the world dealing with what I have to deal with. However, some people might never meet someone who deals with the same struggles as them. This is why a day like February 28th is so important. Most people who suffer from rare diseases will often tell you that they're feeling okay just so they don't have to explain for the millionth time what is going on.
Awareness for rare diseases is important. Doctors need to pay more attention to them. A day like Rare Disease Day gets the people who are struggling to let their voices be heard.