Rural America Conversations
By Dr. Will | The People’s Doctor
Sickle cell disease has affected families for generations. Although the condition was first described in American medical literature in 1910, people were living with its devastating effects long before the disease had a name.
For those living with sickle cell disease, a pain crisis is not a minor ache or discomfort. During a crisis, abnormal red blood cells become rigid and form a crescent, or sickle, shape. These cells can obstruct blood flow and prevent oxygen from reaching different parts of the body. The result can be sudden and severe pain, sometimes requiring emergency treatment or hospitalization. Over time, sickle cell disease can also lead to anemia, infections, stroke, organ damage, and other life-threatening complications.
The disease disproportionately affects Black Americans, but it is important to understand why. Sickle cell disease is inherited and is not limited to one racial or ethnic group. The sickle cell gene is more common among people whose ancestors came from regions where malaria has historically been widespread, including parts of sub-Saharan Africa, the Mediterranean, the Middle East, India, and parts of Central and South America.
Carrying one copy of the sickle cell gene, known as sickle cell trait, provides partial protection against severe malaria. This evolutionary advantage helped the gene persist in regions where malaria was common. However, when a child inherits an abnormal sickle cell gene from both parents, they may be born with sickle cell disease.
Approximately 100,000 people in the United States are living with sickle cell disease. More than 90% are Black or African American. The disease affects about one in every 365 Black births, while approximately one in every 13 Black babies is born with sickle cell trait.
The burden is especially significant in Mississippi and throughout the rural South. An estimated 3,000 to 4,000 Mississippians are living with sickle cell disease. In addition, newborn screening data have shown that approximately 3.4% of babies born in Mississippi carry sickle cell trait — one of the highest rates reported in the nation. While most individuals with sickle cell trait live healthy lives, knowing your trait status is important, particularly when planning a family. If both parents have sickle cell trait, each pregnancy carries a 25% chance of resulting in a child with sickle cell disease.
For decades, treatment has focused on preventing complications, controlling pain, reducing hospitalizations, and helping patients live longer and healthier lives. While those advances have made a tremendous difference, they have not addressed the underlying cause of the disease.
Today, that is beginning to change.
Tulane University School of Medicine, LCMC Health, and Manning Family Children’s recently helped bring the Gulf South’s first CRISPR-based gene-editing therapy for sickle cell disease to a patient. This groundbreaking treatment uses a patient’s own stem cells to restore healthy hemoglobin production, offering what physicians describe as a functional cure for eligible patients.
The first recipient in the Gulf South, 23-year-old Daniel Cressy of Louisiana, had lived with sickle cell disease since infancy. After his stem cells were genetically modified and returned to his body, his hemoglobin levels reached the normal range for the first time in his life. It represents a remarkable milestone — not only for him, but for countless families who have waited decades for a treatment that goes beyond symptom management.
Although gene therapy is not yet appropriate or accessible for everyone, this achievement demonstrates how decades of scientific research are being translated into life-changing treatments. It also highlights the importance of ensuring that patients in rural communities have equitable access to these groundbreaking therapies.
For Mississippi, this breakthrough brings hope. Rural communities continue to face shortages of specialists, transportation barriers, and limited access to advanced medical treatments. As innovations like gene therapy become more widely available, we must continue working to ensure that where a person lives does not determine the quality of healthcare they receive.
For more than a century, sickle cell disease has challenged patients, families, and healthcare professionals alike. Today, thanks to advances in science and the dedication of physicians and researchers (including those at Tulane University School of Medicine) we are witnessing a new chapter in medicine.
The conversation is no longer only about surviving sickle cell disease.
For some patients, it is becoming about overcoming it.
Stay well,
Dr. Will
Disclaimer: This article is for educational and informational purposes only and is not intended to diagnose, treat, or replace medical advice from your healthcare provider.
