I bet you haven’t heard of Rare Disease Day, that’s OK because i am going to tell you all about it and what make me RARE. And this post is not sponsored in any way , I just feel really strongly about today.
Why is this so important to me ?
I have a Rare Blood Disorder. It is called Diamond Black Fann Anemia, DBA for short. It is something i have had my entire life. There are only two ways to treat it either by steroids, prednisone, or by chronic blood transfusions. Most of my life it has been pretty well handled until a couple of years ago.
I was on chronic steroids for 18 years and just recently switched to chronic blood transfusion , because believe it or not the side effects are mostly less. All of that being said it is important to me that rare diseases get their time in the spotlight per se. I know not a lot of people know about DBA and now one of my goals is to get it out there along with the importance of giving blood. There are lots more like me who need blood every 3-6 weeks in order to live, actually around 500 people in the US.
I won the genetic lottery.
So heres to all the #spoonies and #chronicillness people I have decided to use my blog to talk about my everyday life, and that inevitably will include stuff about DBA.
I am #DBAstrong
This is one of my Awesome DBA friends. She is telling you what DBA is. enjoy.