As patients born with Sickle Cell Disease, we belong to a committed multi-generational community of individuals who for years have fought to change the healthcare system while simultaneously battling a difficult and deadly disease.As a result, patients owe the prior generation of patients and caregivers who have invested countless hours in the difficult and ongoing work of advocating for better care.
Their work has fought for increases in Federal funding that has improved the research and development of pharmaceuticals and therapeutics that have improved the delivery of Sickle Cell Disease patient care and has improved the quality of our lives and prolonged our lives.
As patients, we must learn the three ways to become a strong advocate for ourselves and our families by fully accepting and embracing the reality of the disease that causes pain, disruption and threatens every possibility of living a normal life.
For patients, the idea of fully embracing our disease is easier said than done. Because many SCD patients feel overwhelmed, helpless and convince ourselves that our actions attitudes and behaviors have little if any positive influence on our ability to manage or change the trajectory of our health and wellbeing.
Because of the feelings of helplessness many patients have been known to (at some point and time in their young lives) embrace reckless actions, attitudes and behaviors in an attempt to experience something that resembles normalcy.
But, the first step of self-advocacy requires patients to consistently act on behalf of their best and most personal interest. Especially since we are usually totally reliant on the help of others when we are experiencing crisis pain.
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