In my view, better dialogue between patients, families and providers is critical. By remaining at home, not only is the patient enduring unremitting pain, they are also delaying treatment for organ and tissue damage caused by the disease.Ī bone marrow transplant is one of the possible cures for sickle cell disease. They wait, as the pain intensifies to 8, 9 or 10 on a 0-10 scale. Patients report feeling “less than human” when providers ignore or discount their pain complaints.Īs a result, many patients with sickle cell disease avoid going to the emergency room and do so only when they have exhausted every treatment available at home. These negative views stigmatize those with the disease and contribute to the stress of living with the illness. Instead, they may suspect drug-seeking behavior, deny them pain medicines and label them drug addicts. But often, doctors and nurses do not believe their complaints and requests for strong medications to stop the pain. Sometimes, these acute pain episodes are excruciating and last up to 11 days. People with the disease frequently visit the emergency room and are hospitalized for pain control. Structural racism and stigma compound the inequities. it is most common in those of African descent. Although anyone with a faulty hemoglobin gene can pass the disease to their children, in the U.S. A century after sickle cell disease was identified, glaring health inequities in its diagnosis, treatment, cures and research about it persist. Of the nearly 75,000 Americans hospitalized for sickle cell disease from 2016 to 2018, more than 93% were Black. Still, life expectancy for those with sickle cell disease in the U.S., even with public health insurance, is almost 24 years less than the general population – 52.6 years compared with 76.1 years. In contrast, few American children with sickle cell disease who have access to medical care die during childhood. Sickle cell disease is particularly devastating to families in lower-income countries, where many children with the condition die before their fifth birthday. When the malaria parasite infects the red blood cells of someone with sickle cell trait, the infected cell sickles, and then the body’s immune system removes it. Most ancestors of those with sickle cell trait likely came from Africa, South Asia or Mediterranean regions where it protected the population against malaria. Three million more Americans carry the sickle cell gene, a condition known as sickle cell trait, because they inherited the gene from only one parent. In the U.S., 100,000 people have the disease. Worldwide, nearly 8 million people live with sickle cell disease. Mark Garlick/Science Photo Library via Getty Images A reduced life expectancy For patients with sickle cell disease, about half of their blood cells have the characteristic sickle shape, preventing proper blood flow and oxygen from getting to organs and tissues.
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