I promise I haven’t forgotten about my blog. I have just been so busy with a few projects that I haven’t had time to update. Today marks one year since I started RareCandace.com and I still can’t believe 365 days have gone by!
I’d like to thank every one of you for reading this. Originally, this was just an outlet for my daily frustrations while undergoing chemotherapy treatments for ITP. I never expected for this to lead me to Washington DC and beyond. I have met so many incredible people during this journey, too many to name. Just know that when you read this, I am thinking about you. I spent a few hours today reminiscing about my rare disease family. A truly incredible group of people.
While I am getting a law degree, I’m not letting that stand in the way of my advocacy. Truth is, I live with a life threatening disease, one that is grossly misunderstood. I’m working on some ideas for my own Biotech, as well as a few research projects. I’m still very much involved in Cures 2015 advocacy and I look forward to being in DC for Rare Disease Week 2016. School is school, if I die tomorrow, my studies are meaningless. I’m always pushing harder for our community, for things that will benefit us for decades to come.
As of last week, I sit with 234,000 platelets and some bizarre large bruises on my body. I have been diagnosed with Sjögren’s Syndrome and Fibromyalgia. I have pain, fatigue and have not slept in three weeks. Despite this, I really am lucky to be alive. I was given a second chance and I’m taking full advantage of it.
Even better things are coming in this next year. Now that I’ve got this Patient Advocacy thing down, time to take over Biotech.