The fight against sickle cell disease: how one hospital in rural Maharashtra is making a difference Premium

Dr. Dawn Kuruvilla shares his experiences treating sickle cell disease patients, highlighting the challenges and efforts to improve their lives.

Dawn Kuruvilla

I know sickle cell disease (SCD) less from the medical textbooks and more from the suffering of patients I’ve treated. Over time, this disease has ceased to be just a diagnosis on a chart. It has become something I deeply despise from the core of my being. It has drawn many of my young, tender-looking patients into painful crises, causing me to cry out in desperation, hoping to see it eradicated — though I know that’s just a daydream. Because it’s a genetic illness with no definitive cure to date.

But desperation and hopelessness cannot be the final word. In Agatha Christie’s words, “I like living. I have sometimes been wildly, despairingly, acutely miserable, racked with sorrow, but through it all, I still know quite certainly that just to be alive is a grand thing.” For the sake of patients, the fight continues, no matter the adversity. We cannot lose.

I have witnessed first hand the plight of young people afflicted by sickle cell disease at three mission hospitals. Patients come in with intense pain, high fever, chest infections, or severe anaemia, needing blood transfusions. Whether in southern Odisha, north Maharashtra, or western Uttar Pradesh, the patients are almost always poor, young, rural, and from the same family.

Sickle cell disease shortens your life by at least twenty years. Slow-progressing organ failure is common in older patients, and acute chest syndrome, a form of lung injury, is a significant cause of death among the young. The disease’s symptoms vary widely among patients, leading to a wide range of complications from anaemia due to the destruction of blood cells to blockage of blood vessels in limbs, causing both severe pain and death due to organ failure. 

Practising medicine is generally hard, but over time, you learn to trust in your skills, hoping that drugs and interventions will relieve suffering. However, sickle cell disease has the reputation of defeating even the most courageous healthcare professionals. The disease often laughs at our best efforts and stops at nothing short of taking precious young lives with its painful and choking grasp.

Doctors on the frontlines