BENEFITING: FOUNDATION FOR SARCOIDOSIS RESEARCH
EVENT DATE: Apr 30, 2016
Barbara Frazier wrote -
Read what Marian has to say about her life with sarcoidosis: My name is Marian Frazier. I am a face of Sarcoidosis. Many of you may know that the famous comedian and actor, Bernie Mack, died at the age of 58, as a result of sarcoidosis. Mahalia Jackson, famed gospel singer, died at the age of 60, in 1972 of cardiac sarcoidosis. Basketball great, Bill Russell and his daughter both have sarcoidosis. When a well-known person, a celebrity, is revealed to have such a devastating disease, our attention is peaked at the mention of it. But there are many people that live with sarcoidosis. Many don't even know they have it; but there are others who do know and suffer daily; they are faceless, when it comes to this disease. The faceless come in all ages, shapes, colors, from all walks of life, all cultures and ethnicities. Reports show that sarcoidosis disproportionately affects African Americans; and according to some reports, women. Indeed, the faceless are those not in the spotlight; and they too need to have the light shone on them. Imagine going to bed at night, feeling perfectly normal, and waking up the next morning in total fear because you are suddenly without sight. That is what happened to me in 2002. I regained my sight but not without medical repercussions. This was the beginning of what would become a growing list of medical and emotional problems. It took years to find out what was wrong with my body. It was not until 2011 that I was diagnosed with sarcoidosis. Since 2002, doctors have diagnosed me with uveitis, detached retina, cataracts, asthma, rheumatoid arthritis, fibromyalgia, osteoporosis, morphea, schleroderma, digestive tract disorders, auto immune complications, sleep apnea, neurological disorders, depression and more. Each of these diseases has produced its own debilitating effects. I often wonder whether these problems are sarcoidosis-related; and I want to know the answer. My name is Marian Frazier. I am not a celebrity. I am among the faceless with sarcoidosis. As you might imagine, I have had to take many medications and have undergone several medical procedures to keep me functioning and coping at some level of normalcy each day. A steroid has been a predominant medication in my regimen since 2002. Thank God, as a result of a procedure done about two (2) months ago, my doctor has reported that the sarcoidosis is in remission!! The sarcoidosis is in remission; but there is still an elevated level of inflammation in my lungs; I am currently following a supervised regimen of medications for another lung disease. Some days I feel like what I characterize as "a hot mess". I have no idea whether all these medical problems are due to sarcoidosis; but I want research to be done to find out, and to find a cure. How disruptive this disease has been to my life. It has negatively impacted my career, my social and my family life. To me, sarcoidosis is a mysterious disease. It is a mystery that must be solved. How many faceless people, like me, are plagued with this disease? How many faceless lives are destroyed, lost to it? What can be done to unveil the faces of sarcoid sufferers? I'm confronting this disease. I founded the Queen City Sarcoidosis Foundation to make people aware of this horrible disease and to bridge the medical community with the community-at-large, and to fund research to find a cure. I encourage everyone reading this story and the stories of others affected by this debilitating disease to do your own research to learn about it and to attend seminars, worshops, health fairs or similar events to become more informed about it. Most importantly, I urge you to donate in order to fund research to find a cure. April is "Sarcoidosis Awareness Month"; but we can take action year-round.