Sickle Cell Disease (SCD) is a group of inherited red blood cell disorders that affects hemoglobin, the protein that carries oxygen through the body. Normally, red blood cells are circular and flexible to move easily through the blood vessels.
If you have sickle cell disease, your red blood cells are crescent or “sickle” shaped. These cells do not bend and move easily and can block blood flow to the rest of your body.
The blocked blood flow through the body can lead to serious problems, including stroke, eye problems, infections and episodes of pain, called pain crises.
Sickle cell disease affects about 100,000 Americans, many of whom are African American, and over 20 million people worldwide.
As a sickle cell patient, I know all too well the ill affects this disease brings.
Not long-ago individuals born with Sickle Cell Disease faced unimaginable and often insurmountable challenges in their lives because little was known about the disease, traditional medical care provided to patients was often poor, inconsistent and life expectancy was short.
As a result, many patients, families and care givers grew discouraged and suspicious.
And many began to resent the inconsistencies in traditional medical care as they felt they were left lingering in the shadows while attempting to figure out how to manage the severity of reoccurring crisis pain and how to mitigate the residual and accumulative physical and emotional effects of a disease that threatens any attempt at living a normal life.
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This suspicion and resentment have given birth to generations of patients who have
intentionally abandoned traditional medical care and reluctantly only rely on emergency department care as a last resort.
However, we have fought back, found our voice, and have organized and developed the strength, determination and tenacity to become outspoken and a well-informed community of tireless advocates working to improve every aspect of patient care.
Advocates who share their painful experiences and stories make great sacrifices and at times risk their health and wellbeing in an attempt to educate and inspire other SCD patients, physicians, law makers, researchers, pharmaceuticals companies, emergency departments to listen and respond to the challenges faced as sickle cell disease patients.
The SCD community has also inspired an enlisted a growing community of committed physicians and their researchers and development professional colleagues who understand the educational value of patient experiences and who are also advocating for improved patient care through improved protocols, procedures and therapeutics.
Together these communities continue to work together to not only improve awareness, understanding but most importantly to insure federal and state funding matches the need of this communities’ efforts.
I am convinced the next generation of Sickle Cell Disease patient advocates will ensure a permanent change to the patient care and disease narrative and inspire families, caretakers and patients to “Embrace the New Normal” of Sickle Cell Disease
Adrian Williams is a sickle cell patient and advocate.
