By Ginger Davis
The national Sickle Cell Disease Association of America (SCDAA), lead the initiative for Sickle Cell Anemia, also known as Sickle Cell Disease (SCD) to be observed national in 1975. The organization and its members held events for an entire month, across the country to bring attention to SCD and raise awareness.
SCDAA succeeded in its efforts to gain recognition nationally for this genetically inherited disorder in 1983 when the House of Representatives passed with a unanimous vote, to have September designated as National Sickle Cell Anemia Awareness Month. The resolution was then presented to President Jimmy Carter, to which he signed in August of 1983.
Since 1983, community-based organizations serving the needs of individuals and families living with sickle cell disease have been hosting events, namely, workshops, symposiums, conferences, walk-a-thons, and performances to raise awareness for sickle cell, and to raise funds to support research, public education and direct services to families.
Sickle cell anemia is a genetic anomaly that affects the beta-globin molecule in red blood cells. The effect is caused by the switching of two amino acids in the beta-globin protein chain. Glutamic acid and Valine switch place and cause healthy red blood cells to turn into a sickled or crescent shaped cells. The sickled cells become sticky and clump together in small blood vessel, causing what is known as a vaso-occlusive crisis. Crisis is the medical term used to describe tissue inflammation and pain caused by the sickling process. SCD is a chronic illness that is emotionally and physically debilitating, as well as life-threatening.
Sickling or vaso-occlusive crisis can occur in muscle tissue, in bones, joins and major organs. This leads to damage and destruction of tissue due to loss of oxygen. A crisis in the brain is a stroke. Sickling in the lung produces pulmonary infarction or embolism, the sane can happen in the liver or kidneys resulting in failure of these organs. Loss of oxygen supply to bone tissue is called avascular necrosis, which can lead to tiny breaks in the bone that will eventually case the bone to collapse.
Even with the potential for severe complications, people living with sickle cell disease can live a relatively healthy life with access to comprehensive medical care and holistic lifestyle. More on that later…
I would like to share two great resources with you – a wonderful educational video created by the Science and Technology Academy of São José do Rio Preto, Brazil; and a friend’s website “Faces of Sickle Cell Disease”.