I have a severe immune deficiency -- idiopathic CD lymphocytopenia -- that has gone systemically undiagnosed for over two years now. I believe that I acquired my “chronic viral syndrome of unknown etiology” through a sexual exposure and I also believe I have sexually-infected another man. Thus, I believe I have an undiagnosed acquired immune deficiency (or what many researchers call "NON HIV AIDS").
Initially, I thought my doctors were supposed to be helping me, but they have now exhausted all clinically-available diagnostic tests. Later, I thought the Center for Disease Control (CDC) would assist me, but after some very specialized testing they no longer acknowledge me. Because I am not diagnosed, I am offered no treatment. My once seemingly prosperous future remains bleak.
Throughout my journey, I have had several doctors tell me that my symptoms were “a figment” of my “imagination.” They told me that "nobody cares" about me. They advised me to “stop writing letters” and to "stop fighting” all together. I purged most of their ill-directed advice and argued them that they were wrong. I know that with the unwavering support of my family and friends that I will fight this until the day I die. But, I am too sick and too tired to fight this alone any longer, as trying to save the world has taken a great physical and emotional toll on me. I am just hoping for a little advice as to where I should focus my diminishing energies. My life (not unlike yours) is dedicated to the humanitarian effort of speaking for those that do not possess the same abilities.
I am not writing to you today for funding. I am not writing to you for a diagnosis. I am not even writing to you today to help me find a cure. My plight is very simple: 886 days post-infection getting my body into a medical research program remains my only goal. I believe this to be a very simple and reasonable request that requires your support: one (1) phone call, email or letter from you to the National Institute of Allergy and Infectious Diseases.
I am your daughter. I am your coworker. I am your sister, your aunt, and your best friend.
What would you do?
What would you do if you were fighting for your life and potentially the lives of millions of others?
Thank you for your time and attention.