“Sickle cell disease (SCD) affects about 100,000 Americans as an inherited genetic disorder with intermittent exacerbations requiring hospitalization. SCD is also a painful and complicated disease with no single physician specialist that can provide pain relief. While SCD pain is similar in severity to cancer pain, patients struggle to find adequate pain relief because they are often labeled as ‘doesn’t appear in pain’ as the imaging scans may not show actual pathology.
Some palliative colleagues draw the comparison that cancer is visible in scans and SCD is not, which gives mental ease to clinicians as cancer patients’ pain is easier to believe and treat appropriately. However, the source of SCD pain is typically micro-vascular because the disease generates pain due to occlusion in the micro-vascular. It can’t be “seen” on scans except when worse complications like acute chest syndrome or avascular necrosis of a bigger joint are present.”
Ramandeep Kaur is a palliative medicine physician.
She shares her story and discusses her KevinMD article, “Patients need palliative care to manage the pain of sickle cell disease.”
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