Celebrate Life Living With Sickle Cell Disease
Some writings depict Sickle Cell Anemia (SCA) that are more than 2000 years old. In 1910, medical intern Ernest E. Irons, and attending physician Dr. John Herrick gave a name to this ancient genetic disorder based on what they were seeing from the blood sample of a Grenadian dental student Walter Clement Noel.
In my recollection, the 1970s was the one time in recent history that sickle cell was most visible and audible. Between the Cooperative Study of Sickle Cell Disease (CSSCD) commissioned in 1978, spurring studies that led to the creation of comprehensive treatment programs for children and adults identified with sickle hemoglobin from public testing, and the Black Panther Party’s national public education program SCA had gained considerable public attention. Then, by the mid-1980s, general promotion of sickle cell disease had vanished.
When I speak at community health events, at colleges or even on the street, many people tell me that they thought sickle cell didn’t exist anymore, because they stopped hearing about it. Some have never heard of sickle cell.
Today this inherited blood disorder is more commonly known as Sickle Cell Disease (SCD). Sickle cell anemia characterizes homozygous hemoglobin SS — the most common type of sickle cell (hemoglobinopathy) worldwide. The second and third most common types of sickle cell in order of prevalence are Hemoglobin SC and Hemoglobin S Beta Thalassemia. The combination of the S hemoglobin with any other hemoglobin type is called a Sickle Syndrome.
The main reason sickle cell has become visible from common public health discussions is the community has become silent. We don’t talk about it. Not with others who are living with this painful condition, and certainly not with others in our immediate circumstance.
WHY
Shame. There is a pallor of shame that envelops individuals, families and the entire community. We bare shame for an illness caused by a lack of understanding about the physiological manifestation of the disease, and how it impacts the whole person. There is also an erroneous perception that Sickle Cell Disease is A Black Thing! I assure you it is not. The mutation that resulted in the development of this hemoglobin disorder has been scientifically linked to the malaria parasite Plasmodium. Everywhere that malaria was pandemic, SCD is indigenous. Southern China, Southeast Asia (Cambodia, Laos, Viet Nam, etc.), Italy, Greece, Turkey, Israel, India, Central, and South America in addition to Africa. Africa just happens to have the largest population of live births diagnosed with the disorder. Can you negate the pain and suffering of someone with sickle cell because their skin is not brown and they are not of African descent?
There is nothing to be ashamed of. Sickle Cell was not acquired through bad behaviors. It is being passed on from one generation to the next. From parents who do not know they are carriers because the access to testing is no longer readily available. Most egregiously, because of the perception that only people of African descent are affected.
Racial, social and economic disparities have fed misperceptions about Sickle Cell Disease, and for the most part, contribute to inequalities in the delivery of healthcare. Understanding the underlying causes of the invisibility and silence are the first steps to effecting a positive change. And change we do need!
Celebrate Life!
Sadly, Mr. Walter Clement Noel died at the young age of 32-years, nine years after making scientific history. Today, adults with sickle cell are living well into their 60s, 70s, and 80s. This is something to Celebrate!
There are a lot of positive things that are happening on so many fronts for sickle cell right now; research for better healing therapies, research to find a cure, legislation to increase funding for medical services, especially comprehensive treatment programs for adults and community support. Success cannot be gained without the help of families living with sickle cell disease, our extended families, and concerned individuals in the general public. Like any other health concern that has built public attention for their issue, everyone living with and who are negatively impacted by this condition need to stand up. Speak up, and advocate.
Moving Forward
We invite all of you who call yourselves advocates to join ranks. As the adage states; “there is strength in numbers.” Together we are stronger. Together, speaking with #1ViralVoice we are louder.
If you have been thinking about getting involved, don’t wait another day! There are organizations in or near your community that need your help. SCD community-based organizations (CBOs) need committed people with knowledge, skills, passion, and will dedicate time to supporting its mission. With many hands, the work can get done, for the betterment of all.
CBOs needing help and individuals and families interested in becoming active can send an email to sm@untoldstorymedia.com. We are happy to serve as a conduit to connect you.
Ginger Davis is the managing partner of UNTOLD Story, a Brooklyn-based media production company offering production, business development, and marketing communication services. UNTOLD Story champions the causes of Sickle Cell Disease and Youth Mentorship.
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