Purple Snowflakes In The Fight To Win

My name is Marian Frazier. I am an ordinary person, with an extraordinary illness.
I am a 39-year old Black female, currently living in Baltimore, Maryland, in order
to be close to my medical experts at Johns Hopkins Hospital. I am faceless among
millions; but I am a face of Sarcoidosis.
What is Sarcoidosis? It is an inflammatory disease that can attack any or multiple
organs, all body systems, from the skin to the lungs to the muscles and bones, even
the brain. It particularly strikes the lungs and lymph nodes. There is no cure for
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. Some don’t even know they have it; but, there are others
who do know and suffer daily, (millions) who 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.
My path to being diagnosed with Sarcoidosis was a long and bumpy one. My
journey began in the year 2002, fresh out of college and looking forward to a
fulfilling career, social and family life. I went to an optician for what I thought
would be a routine eye exam. After he finished my eye exam, the doctor advised
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. Imagine going to
bed at night, feeling perfectly normal, and waking up the next morning in total fear
because you are suddenly without sight! 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 Bechet’s disease.
As the day proceeded, I regained my sight; but not without ensuing medical
repercussions. This was the beginning of a growing list of medical and emotional
problems, financial and social problems and career setbacks. 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. He shared with me that he had
studied medicine at Howard University, where he learned that sarcoidosis is a rare
and incurable disease that largely impacts the Black population. The doctor
referred me to Johns Hopkins Hospital. Wilmer 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,
including fatigue, joint swelling and pain. Eventually, I saw a Rheumatologist
who after many visits, tests and procedures, diagnosed me, in 2011, with
sarcoidosis. Since 2002 doctors had diagnosed me with uveitis, asthma,
rheumatoid arthritis, fibromyalgia, morphea, scleroderma, gall bladder disorder,
auto immune complications, depression. Each of these diseases has produced its
own debilitating effects.
The sarcoidosis diagnosis came eight (8) years after I had begun to suffer periods
of temporary blindness. There is so much that the medical experts do not know
about sarcoidosis. I am continuing to learn about this disease. There is so much I
don’t know about it. I do know that it has not only severely and permanently
affected my vision; it also affects my skin, lymph nodes, muscles, joints, heart and
lungs. My most recent challenges include medical problems with my digestive
system, liver, kidneys and gall bladder. I’ve had surgery on my bile ducts; my gall
bladder has been removed. Additionally, sarcoidosis causes fatigue, and many side
effects from the heavy dosages of medication, such as prednisone and
chemotherapy drugs, to name a couple. Side effects have been those such as
weight gain and mood changes. There are already eminent signs that other organs
are at risk. One such signal is the development of what is medically termed as a
“pseudo-tumor”, which can be an indicator of “neuro-sarcoidosis”. During the
past two (2) years, I have had several lumbar punctures to draw down my spinal –
neural fluid level. I have many other medical problems, which might have some
relationship to sarcoidosis (an auto immune disease), including epilepsy, morphea,
latent tuberculosis, sleep apnea, and others.
Those are some of the “unknowns” that I want to be revealed. The experts don’t
know; I pray that medical research reveals the answers! Because of sarcoidosis and
related medical 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 and the
saxophone. The decline in my lung capacity became noticeably apparent during
my college years. In hind-sight, this was likely a symptom of sarcoidosis. My job
performance and job retention have been severely impacted. Sadly, I was
profoundly affected about a year and a half ago, when I took a phone call from my
last employer, while in a hospital bed, being prepared for a medical procedure.
The caller informed me that I was terminated that day because there was a project
deadline to be met; and I was not able to assist in meeting it. I have not been
employed since that time.
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.
Again, my name is Marian Frazier. I am not a celebrity. I am among the faceless
with sarcoidosis. For just a couple of minutes, I wish you could peer into my face
and imagine yourself in my body. As you might imagine, I must take many
medications as therapeutic measures to keep me functioning and coping at some
level of normalcy each day. A steroid, prednisone, has been a predominant
medication in my regimen since 2002. Other medications I take include cellcept,
and chemotherapy drugs including methotrexate. My current pulmonologist, at
Johns Hopkins Hospital, has in recent weeks, ordered treatment for sarcoidosis by
infusions of chemotherapy drugs. I expect to begin monthly visits to an infusion
center within the next several weeks.
I suffer from fatigue and I frequently have migraine headaches. Most days it is
very difficult to get out of bed. I have many restless or sleepless nights. I have
been diagnosed with sleep apnea. As a result, I feel drained of energy; I tire out
easily during the day. Some days, my entire body is in agonizing pain – my joints,
my hands, wrists, ankles and feet, swollen and aching, making it a task to close my
hands, and even to walk. Quite frankly, some days I feel like what I characterize
as “a hot mess”.
I have no idea whether all these medical problems are because of sarcoidosis; but I
want to find out. I feel so bad, most of the time. How disruptive this disease has
been to my life. It has had a negative impact on my career, my social and my
family life. How disruptive it has been to my well-being. To me, sarcoidosis is a
mysterious disease. It is a mystery that must be solved.
Despite my situation, I believe I have come to grips with my fight with sarcoidosis.
I refuse to accept that I am doomed to suffer from this disease for the rest of my
life—or, that I may die because of this debilitating disease. Okay, no one knows
what causes sarcoidosis, it’s incurable! Why doesn’t someone consider it
important enough to search for a cure? How many faceless people are plagued by
this disease? How many faceless lives are destroyed, lost to it? What can be done
to unveil the faces of sarcoid sufferers? I am confronting this disease.
I am determined to have at least some small share in helping victims of sarcoidosis
to find some relief as they struggle to cope with the effects of the disease; and to,
in the long term, explore ways to search for a cure. I know this will be no easy
task. I know it will take “power beyond what is normal”; but I feel I am up to the
task. This is a journey for life; and I am in it for the long haul, because it may very
well mean my life in the short term.
I invite each of you to join me on my journey to improve the lives of the faceless
that have sarcoidosis - to find a cure. I know that the journey begins with
awareness and education about the disease, its symptoms and effects. Undertaking
this journey requires support. As President/CEO, Queen City Sarcoidosis
Foundation (QCSF), I invite your support in any of a variety of ways. Your
financial donations will always be welcomed to assist in funding sarcoidosis
education and awareness seminars, health fairs and Expo’s; grants for sarcoidosis
research and similar activities. We are a non-profit 501(c)(3) organization. Your
donations are tax deductible. We are accepting donations 24/7 on our website at
www.qcsf.org.
I firmly believe that “QCSF and U – Together – We Will Find A Cure”