The story of Cindi
I was diagnosed with Common Variable Immune Deficiency in 2005, at the age of 25, while working as a critical care RN. I was experiencing unusual symptoms like fevers and sore throat on days that I worked and around ill patients. I was placed on prophylactic antibiotics daily but things declined. By 2007 I was placed on monthly IVIG infusions and I had to give up my position in critical care as taking care of the sickest patients was taking a toll on me. I tried to not let that get me down. I persevered and started working for a General Surgeon. But one day I overheard one of the doctors conversing with nurses in the office about my “so called” condition and necessary treatments and that I do not not look sick. I decided that wasn’t the place for me. Many of the rare diseases are also invisible diseases and hard for others to understand and give compassion. I then started an office job performing precertifications for insurance. After a few years the stress of maintaining this with the multiple doctor appointments and monthly infusions began to really take a toll on me. I was always in the hospital, frequently infected and now having heart problems. I had to go on disability at the age of 33. I now receive treatevery three weeks but after being on treatment for 18 years I serve as a patient advocate for the immune deficiency foundation and visit plasma donation centers and speak with donors and workers and thank them for all they do. I think it is the least that I can do I. The situation that I am in now as I am grateful for all they do not only for myself but for the many friends that I have met along the way.