Today is Nation Rare Disease Day (2016). Just in the United States, there are about 30 million people affected by a rare disease. I am a part of this group. Four years ago my life was turned upside down because I heard the diagnoses of a rare brain tumor “Lhermitte-Duclos disease”. Then most recently, I had a craniotomy on February 23, 2015, and once again my journey with a rare brain tumor was brought to another frustrating and scary times. My surgery went great but I had a lot of unusual medical complication.
Through these challenges, I have faced this past year and throughout my life. I’ve learned that my voice is an important key in this journey. I really want to help others going through the same/similar medication condition or any obstacles in life. That is why I have decided to write a blog post about opening up about my life journey with a rare disease. I don’t want to be quite, I love my life and my journey even through it has been very hard and a scary one.
Lastly, because it’s a special day for many people around the world and their families. I want to celebrate everyone that’s been living the journey with a rare disease. Even the ones that have lost their lives so please stay tuned because it will be a creative/artistic drawing (video).