GET TO KNOW THE FOUNDERS PERSONALLY
Marian S. Frazier, Founder/President -CEO
My name is Marian S. Frazier. My path to being diagnosed with Sarcoidosis was a long and bumpy one. My journey began in the year 2002, when I went to an optician for what I thought would be a routine eye exam. After he finished my eye exam, the doctor told me that I should go to the Washington Hospital Center Eye Institute. He told me that he saw something serious going on in the back of my eye; but he was not sure what it was – he could not accurately diagnose the problem with the equipment in his office. Since I felt fine at the time, I went home and spent the evening with my parents, not feeling any sense of urgency in following up on the doctor’s referral.
Early the next morning when I woke up, I could not see anything. My mom came into my room to wake me up. I quietly said to her, “Mom, I can’t see”. She took me to the Washington Hospital Center Eye Institute. It was a Sunday morning; the Institute was open on an emergency basis only. There was only one ophthalmologist on duty. The doctor initially diagnosed that it was Beshet’s disease.
As the day proceeded; I regained my sight. This was the beginning of several visits to the Eye Institute. But there would be years of examinations, testing and prednisone therapy to come. In the spring of 2003, I experienced a period of temporary blindness again. An ophthalmologist in Southern Maryland determined that I could possibly have sarcoidosis. This was the first time I had heard about such a disease. The doctor referred me to Johns Hopkins Hospital Eye Clinic in Baltimore, Maryland. There I was diagnosed with Uveitis (inflammation of the eye). During the course of my visits for over a two-year period, I was also diagnosed with a detached retina as my vision continued to decline. I also experienced periods of temporary blindness from time to time.
In 2005, I moved to Hickory, North Carolina, where I continued to experience problems with my vision; and I began to experience other physical problems. Eventually, I saw a Rheumatologist who after many visits, tests and procedures, diagnosed me with sarcoidosis. That was approximately three (3) years ago – in 2010. This was eight (8) years after I had had become temporarily blinded.
I am continuing to learn about this disease. There is so much I don’t know about sarcoidosis. I do know that it has not only severely and permanently affected my vision; it also affects my skin, lymph nodes, muscles, joints and lungs. Additionally, it causes fatigue, side effects from the heavy dosages of medication, including prednisone and chemotherapy, to name a couple. Other side effects for me have been those such as weight gain and mood changes. My most recent challenges affected my kidneys and gall bladder. My gall bladder has been removed. There are already eminent signs that other organs are at risk. Because of these problems, my work life, family life and social life have been negatively impacted for years. For example, I began college
as a Music Major. I performed very well with wind instruments, especially with the clarinet. The decline in my lung capacity became noticeably apparent during my college years. In hind-sight, this was likely a symptom of sarcoidosis.
So, I am on a journey, fighting to do all that I can to help find a cure for sarcoidosis through the Queen City Sarcoidosis Foundation, Inc. While on that journey, I hope to bring along others like me. I intend to provide current information about sarcoidosis; and I intend to get the support of medical and research professionals, as well as others interested in the furtherance of the organization’s goal to find a cure. I firmly believe that “QCSF and U – Together – We Will Find A Cure”.
Diana P. Nutter, Founder and Chairwoman Emeritus
My name is Diana. I am the Co- Founder of the Queen City Sarcoidosis Foundation, Inc., I live with the disease Sarcoidosis. Sarcoidosis (also called Sarcoid) is an auto immune disease with no known origin or cure. It largely affects African American women between their early 20s to mid 40s. I was 29 when I was diagnosed. It also has a very large range of symptoms ranging from none to debilitating inflammation in the body to swollen lymph nodes and the list goes on. There are people that walk around with this dis-ease and don’t even know they have it and there are those that suffer on a daily basis. I fit into the latter category.
Sarcoid can attack any part of the body at any given time and this includes your internal organs, brain and skin. This disease mimics so many other diseases that it is often miss diagnosed which can cause the patient much added and unneeded stress. Fibromyalgia and rheumatoid arthritis are the most frequent miss diagnoses because they share the most symptoms with Sarcoid in people that have chronic symptoms.
Although in recent years the information about this disease has increased, there is still very little publicized about this disease because it is misdiagnosed so frequently, and because it is not killing people in epidemic proportions. Although Sarcoid can kill! Unfortunately, Sarcoid is now getting more atten-tion because it did take the life of one of our most celebrated African Ameri-can comedians, Mr. Bernie Mac. This fact wasn’t mentioned at the time of his death, because of the lack of “glamorization” of the disease. Sarcoid kills by causing your lungs to fill with fluid as your body tries to protect them from the disease that is attacking it. Basically you suffocate because your body is try-ing to save your life. Crazy! Right?
I was diagnosed back in 1997 and for 6 months I lived in excruciating pain without any knowledge as to why. I didn’t know what was going on with me and neither did the doctors. I don’t remember which symptom showed up first, the persistent dry cough or the extreme chronic fatigue. I do remember one day being at work, sitting up on my fork lift and realizing that I feel
like crap and my body was on fire, like I was burning from the inside out. As a former high school and collegiate athlete I was well aware of my body and how it should function, so I picked up on the fact that I was ill rather quickly. I can’t put into the words the fear that washes over you when you first realize that something is wrong and you have no idea what because other than carry-ing a little extra weight I was a fairly healthy woman.
So thus began the very frustrating and often times humiliating process of try-ing to figure out what was going on with me. After months of being poked and prodded, having to swallow all sorts of concoctions and having one doctor tell me the only thing that was wrong with me was I was too fat…..needless to say she is still trying to get her bill paid, and others saying it was psychosomatic or asking about my sexual practices as if I contracted an STD. By this time my mother was more frustrated than me. So she scooped me up and drove me from Hickory to the ER at Baptist in Winston in the middle of the night after finding me curled up in the fetal position on my bed in tears and unable to move and hardly breath from the pain in my body. There I was given a simple chest x-ray, which none of the doctors prior had done, and from this x-ray a Rheumatologist was able to determine that I had Sarcoid from the swollen lymph nodes. I was then placed on a steroid called Predni-sone, which is one of a very limited number of ways to treat this disease that has no cure but also comes with a whole new set of issues from the side ef-fects. After spending 3 months on the couch the side effects were welcomed as I began to get some relief from the pain. Even though I was starting to feel better physically I was still confused as to what this was I had and thus began the frustrating process of finding reliable information and others who were stricken like me.
To this day I still struggle with this disease. Sometimes I have flare ups that come from out of nowhere and have landed me in the ER. Sometimes my body will give me warning signs that a flare up is on the way by creating little white bumps that are so sensitive to the touch that it hurts me to put on a shirt. When I have a flare up my joints ache and burn, sometimes the cough returns and there is always fatigue that makes it hard to even take a breath, seriously. When this happens the doctors put me back on the Prednisone for a few weeks and sometimes narcotic pain medicines are administered which have their own set of side effects. Yet through it all you have to keep on moving forward and push through it, because life does not stop moving just because you feel bad today. I am proud to be the Co-Founder/ of the Frazier Brown Sarcoidosis Founndion to be a part of the effort to raise awareness to Sarcoid and we must push to raise funds for research to find a cure for this dreadful disease before it takes another life