I know I’ve been MIA for a while, but I’m still here! Since I’ve graduated school and started a new job, life has been pretty busy. As you may already know, I stopped getting Cerezyme infusions in December of 2015. I’m taking Cerdelga now, which is the oral medication for the treatment of Gaucher Disease. Cerelga has helped to somewhat “normalize” my daily life, but I will always remain connected to the GD community.
Starting this blog allowed me to connect with so many other GD patients all over the world. It made me realize that GD does not look like one person. GD has many colors and speaks many different languages. I also learned that even though type 1 is the most common, we, as a community, cannot neglect the stories and experiences of those who are effected by types 2 and 3. I really want my blog to reflect more of those cases too.
With that being said, I have an announcement!
I am now serving on the Rare2Aware Virtual Advisory Board. Rare2Aware is an online community for people who are effected by all types of rare diseases and it is my hope that, while I serve on this board, I can provide useful insight about GD to the organization. I want to make sure that the stories of all types of GD patients are captured and acknowledged: type 1, type 2 and type 3. We have not had our first meeting yet, but I am anxious to see what this new opportunity will bring. I’ll keep you updated!