Dear Lit Loves,
Greetings Literature Loves. Today I am writing a blog post directly to the lovely reporter and broadcaster Anne Curry along with the television stations known as TBS and TNT.
Dear Anne Curry, TNT, and TBS,
Hi. I see where you have a new show titled "Chasing The Cure" whereby a group of medical specialists, a psychologist, and other experts put their heads together regarding the mysterious medical cases of varying patients. While I think this is an intriguing idea and format, I want to let you know that the editorial department for the show " Chasing The Cure" has never responded to my case or question and it's been over a month since I sent my inquiry.
I call myself a medical unicorn because I've dealt with multiple chronic conditions from the early age of sixteen. I developed Uveitis in only the right eye at age sixteen, Meniere's disease in only the left ear at age eighteen, and Uveitic glaucoma at the ripe age of thirty-two which is also when I had my first cataract surgery. I have also through early detection been treated for basal cell carcinoma and squamous cell carcinoma on each arm. Evidently, I have an underlying autoimmune condition that gives rise to Uveitis, Uveitic glaucoma, and retina swelling, but no medical specialist has been able to confirm what the exact autoimmune condition is. At Emory Hospital, I was thought to have Cogan's syndrome; however, there is no way to test for it. Now, I am treated at Duke University Hospital and the educated guess from my medical specialists there is Sarcoidosis; however, to receive an "official" diagnosis Sarcoidosis must be present in at least two organs and thus far only my right eye has shown evidence of the granulomas present in ocular sarcoidosis. It's rather a conundrum isn't it??
All these distinguishing chronic conditions and the as yet to be confirmed autoimmune disorder that gives rise to them have dictated and informed the choices I've had to make in my life and how I live my life on a daily basis. I'm saying right here and now that it's not just physicians who are "chasing the cure", it's real ordinary patients like myself that are on the front lines of medical anomalies. So why do only medical specialists and physicians seem to be the ones who are selected to write their stories of unusual medical cases? Why are we not hearing from the patients who are chasing a diagnosis and battling health insurance companies, trying to find money for deductibles, and experiencing the good and bad of our health care system in the United States? Yes, that's what I want to know: WHY ARE WE NOT HEARING FROM PATIENTS LIKE MYSELF WITHOUT MEDICAL DEGREES, A SIX FIGURE INCOME, A PRESTIGIOUS CAREER POSITION AT A RENOWNED UNIVERSITY HOSPITAL, OR A PHENOMENAL SOCIAL MEDIA PRESENCE??
Don't you in the television and publishing worlds believe the average, ordinary citizen's patient experiences are equally important? And how about those patients like myself who are female and have to cope with not just chronic disease, but a discombobulated medical system, the greedy and oftentimes discriminating health insurance companies, and the prevalence of male physicians and specialists who are demeaning and insulting to their female patients?? When are you going to give attention to those of us who can really tell you what is right and wrong with medicine today???
Till my next post,
Grace
(Amy)
