Rare Disease Awareness Day 2/29/16: Cryoglobulinemia and Me

joyindestructible

This is a hard post for me to write. I don’t like to write about my health. Cyroglobulinemia has stolen a great deal of my life from me but I am determined not to allow it to become my identity. However, February 29^th has been set aside as a day to remember those who suffer from rare diseases, in hopes of igniting understanding, research, and new treatments for those going through the ordeal of being subjected to a poorly understood or unknown disease. I’m not likely to ever meet another person in my community who is Cryoglobulinemic, my doctor has never treated anyone else with this disease, and probably, never will. One of the most disconcerting things about my disease is the look on the faces of health workers when they ask me how to spell, Cryoglobulinemia, and then explain it to them. In many ways, I have been…

View original post 1,433 more words