-By Hauwa Muhammad Lawal
We often hear people associating us with “aljanu”, “abiku”, or “ogbanje” because of the various misconceptions about this disease and your “village people “ aren’t related to any and as such not to blame. Sickle Cell Anemia has nothing to do with evil spirits. A lot of people lost their lives to such misconceptions.
Sickle cell Anemia goes beyond that, there are different types of sickle cell diseases which vary in severity. Hemoglobin SS (also the most common type) and sickle beta zero are the most severe followed by hemoglobin SC and sickle beta plus thalassemia. Mine is “SS” so I’ve had my fair share of excruciating painful episodes. There is a lot more to sickle cell disease than just painful crises. Sickle cell disease is a disorder of the red blood cells, which supply oxygen to all the organs. Because sickle cell disease occurs in the blood, every organ in the body can be affected. Patients with SCD are at risk for stroke, eye disease, gallstones, serious bacterial infections, and anemia, to name a few.
Persons with sickle cell disease (SCD) experience multiple medical and physical complications; the disease also has numerous effects on our social and emotional well-being. You’re told you cant do certain things when you’re younger and as you get older you know your limitations.
Children and adults with sickle-cell anemia may have a smaller than expected height and weight as a result of chronically low oxygen levels during childhood although some look “perfectly fine”. With sickle cell disease, blood clots can also develop in the blood vessels of the heart (causing a heart attack), liver (causing liver failure) and/or kidneys (impairing kidney function). Any of these life-threatening effects of sickle cell disease can occur anytime during childhood or adulthood so you’re always living in constant fear of the unknown.
Individuals with a chronic illness such as sickle cell disease are at risk for depression. Moreover, they are at risk for untreated depression. Depression may go untreated because of the stigma and high rates of disability associated with this chronic illness. Some people are not educated on the illness and they tend to stigmatize persons with this illness.
Depressive symptoms are very common in patients with a chronic medical illness such as sickle cell disease (SCD). Doctors may fail to recognize depression in such patients.
Empowering individuals with an illness that causes them to experience stigma can be a useful strategy to reduce the associated stigma. Listening to patients’ accounts, they describe part of their coping mechanisms to include discussing the illness with their families and communities as well as educating them about SCD improves the support they receive.
While these selfless efforts are both admirable and essential, I have found that there is an undeniable shortage of people advocating for sickle cell. In fact, our biggest supporters are those living with sickle cell disease.
We sometimes feel a loss of control over our lives due to the illness, especially when an illness may be unpredictable, then it becomes a cognitive stressor and impacts adjustment and quality of life.
Individuals living with SCD and their families may also experience uncertainty in everyday life due to the unpredictability of onset of a painful crisis and unforeseen complications, such as infections or the fear of early death.
We deserve your compassion, your influence, your change, your shared help with our burden; we want you to raise money for our walks. Aren’t we worthy enough? We want equity for sickle cell. We want humanity for sickle cell.