Understanding FSGS: 4 Key Facts, Impacts, and Treatment Breakthroughs

Focal Segmental Glomerulosclerosis (FSGS) is a complex and often misunderstood kidney condition that disproportionately affects people of African and Afro-Caribbean descent. It can be challenging to diagnose, difficult to treat, and in some cases, may return even after a kidney transplant. Here are four key facts about FSGS, how they impact patients differently, and what breakthroughs offer new hope.

1. FSGS is Not a Single Disease — It’s a Pattern of Damage

Fact: FSGS refers to a specific type of scarring (sclerosis) found in the glomeruli — the filtering units of the kidney. “Focal” means some glomeruli are affected, and “segmental” means only part of each is scarred.

Impact: This makes diagnosis complicated. FSGS can be primary (no known cause), genetic, or secondary to other conditions like obesity, infections, or drug toxicity. Each type may respond differently to treatment.

Breakthrough: Recent genetic testing advances allow clinicians to identify genetic forms of FSGS more accurately. This can prevent unnecessary treatments and help tailor management plans for families with inherited kidney disorders.

2. FSGS Can Recur After Transplantation

Fact: One of the most frustrating challenges is the recurrence of FSGS even after a kidney transplant — especially in primary FSGS, where the underlying cause may involve circulating factors in the blood.

Impact: Recurrence can lead to rapid graft failure, often within days to weeks post-transplant, and affects a patient’s long-term outcomes and access to further transplants.

Breakthrough: Researchers are now identifying circulating permeability factors believed to cause this recurrence. Therapies like plasma exchange and Rituximab have shown promise in reducing recurrence or managing it early when detected.

3. People of African Descent Have a Higher Risk Due to APOL1 Gene Variants

Fact: Certain APOL1 gene variants, more common in people of African ancestry, have been strongly linked to an increased risk of developing FSGS and other kidney diseases.

Impact: This genetic predisposition helps explain the higher rates of kidney failure in Afro-Caribbean communities. However, not everyone with these variants will develop kidney disease — meaning other environmental or lifestyle factors play a role too.

Breakthrough: Clinical trials are now targeting APOL1-related kidney disease. In 2023, Vertex Pharmaceuticals announced positive results from a Phase 2 trial of VX-147, a drug specifically aimed at treating APOL1-mediated kidney diseases, including FSGS. The trial showed a significant reduction in proteinuria (a key marker of kidney damage), offering a new targeted approach.

4. Protein Leak (Nephrotic Syndrome) Is a Common, Damaging Symptom

Fact: FSGS often leads to nephrotic syndrome, a condition where large amounts of protein are lost in the urine. This can cause swelling, fatigue, and increased risk of infections and blood clots.

Impact: Nephrotic syndrome can severely affect quality of life and is difficult to control. Standard treatments include steroids and immunosuppressants, which have varied success and side effects.

Breakthrough: New treatment strategies focus on SGLT2 inhibitors (like dapagliflozin), initially developed for diabetes, which have shown benefit in reducing proteinuria and slowing kidney function decline. Trials like DAPA-CKD suggest these drugs may be useful even in non-diabetic kidney disease, including FSGS.

FSGS remains a serious and complex condition, but progress is being made — from genetic testing and novel drug therapies to better understanding of risk factors in African and Afro-Caribbean communities.

At AACKA, we are committed to sharing the latest research and empowering our communities with knowledge. If you or someone you know is affected by kidney disease, don’t delay in seeking testing, support, and specialist care.

⚠️ Disclaimer

This article is for general informational purposes only and should not be considered medical advice. Always consult a qualified healthcare professional for diagnosis, treatment, and medical guidance related to FSGS or any other kidney condition. AACKA (African & Afro-Caribbean Kidney Awareness) is not liable for decisions made based on this content.