One of the most eye-opening aspects of living with Chronic Kidney Disease (CKD) is realizing just how diverse and unpredictable its causes can be. From the moment of diagnosis, doctors dig into your medical history, childhood illnesses, and family background to piece together why your kidneys are failing. But for many of us, CKD isn’t just a medical condition — it’s a lifelong journey filled with questions, uncertainties, and the constant need to advocate for ourselves in a system that doesn’t always understand our experiences.
For me, this journey began at 15 when I was diagnosed with CKD with IgA nephropathy. Over the years, I have lived through dialysis, two kidney transplants and everything in between. While diabetes and hypertension are commonly known causes of CKD, many women, including myself, are diagnosed with rare conditions like IgA nephropathy — a disease we may have never even heard of before being told it’s damaging our kidneys.
According to the Mayo Clinic, IgA nephropathy (Berger’s disease) is a kidney disorder caused by the buildup of immunoglobulin A (IgA) in the kidneys, leading to inflammation and gradual loss of function. It is the most common primary glomerulonephritis worldwide, affecting the kidneys directly without being linked to other conditions like diabetes or lupus.
The progression of IgA nephropathy varies widely. Some women go decades without symptoms, while others, like me, experience rapid kidney failure that leads to dialysis and transplant. Because early symptoms are often dismissed or mistaken for minor infections, many women remain undiagnosed until their kidney function has already significantly declined. This is why regular health check-ups and kidney function tests are critical — especially if you experience any of the following symptoms:
Symptoms of IgA Nephropathy:
Cola- or tea-colored urine (often after a cold, sore throat, or respiratory infection)
Visible blood in the urine (hematuria)
Foamy urine due to protein leakage (proteinuria)
Pain below the ribs on one or both sides of the back
Swelling in the hands and feet (edema)
High blood pressure
Weakness and fatigue
Sadly, there is no cure for IgA nephropathy. But medications and lifestyle changes can slow its progression, reduce inflammation, and manage proteinuria, sometimes leading to remission. Controlling blood pressure and cholesterol is also key to protecting kidney function and delaying the need for dialysis or transplant.
Navigating IgA Nephropathy as a Woman in India
In India, awareness and early detection of IgA nephropathy remain major challenges, especially for women. Studies show that IgA nephropathy accounts for about 16.5% of renal biopsies in India. Compared to countries like Japan (47.4%) and China (45%), India’s reported prevalence is lower — likely due to differences in biopsy practices, lack of screening programmes, and limited access to nephrology care.
A study titled "Understanding IgA Nephropathy in South Asia: Challenges and Insights" highlighted some of the biggest issues facing patients here:
Late diagnoses due to lack of awareness and routine testing.
Limited access to nephrologists and specialized kidney care.
Few region-specific treatment protocols for IgA nephropathy.
Gaps in dialysis and transplant accessibility, especially for women.
As someone who has been through two transplants, I understand firsthand the barriers women in India face — not just in getting diagnosed, but also in accessing treatment, affording medication, and navigating a system that often fails to consider our unique health experiences. Many women are diagnosed too late because we dismiss early symptoms or struggle to be taken seriously when we report them. Financial, social, and medical challenges often make it harder for women to access transplants and ongoing care they need.
