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One of the most important factors when dealing with IgA Nephropathy is understanding what you’re up against. Although IgAN is a common kidney disease, it’s still quite misunderstood. This is due, in part, to its relatively recent discovery.

IgAN, also known as Berger’s disease, was first described in 1968. A new type of stain was developed that allowed pathologists to visualize deposits of immunoglobulin A (IgA) within kidney tissue samples, which had never before been seen. The IgA deposits cause inflammation in the glomeruli, the tiny filters of the kidney, and damage the kidneys over time. Although usually considered benign, in some cases IgAN can lead to end-stage renal disease which means the kidneys stop being able to adequately filter waste from the blood, and requires the patient to receive either dialysis or a kidney transplant in order to live.

Everyone’s body produces IgA, which is an antibody that fights off infections. In most people, the IgA proteins do their job and are then expelled. In patients with IgA nephropathy, the IgA proteins are abnormal. The abnormal proteins are low in galactose, a naturally occurring sugar, so the body doesn’t recognize them and sends other antibodies to attack. The antibodies attach to the abnormal IgA, and form little clusters called immune complexes. These immune complexes are too large to easily pass through the tiny and delicate filters of the kidneys, so they get trapped and eventually form deposits. The IgA deposits can lead to lowered kidney function when the delicate glomeruli become inflamed, clogged, and scarred.

IgAN patients usually notice flank pain, hematuria (blood in urine), and proteinuria (protein in urine which causes a foamy or frothy appearance) as their initial symptoms. These symptoms are mainly seen due to a flare-up following an infection of one of the mucosal linings of the body. Typically, a patient will notice dark-colored urine which prompts testing, although it’s also fairly common for asymptomatic patients to be diagnosed following routine blood work or urinalysis that finds evidence of kidney disease. Unfortunately, at this time IgAN can only be confirmed and diagnosed via a renal biopsy.

Generally, IgAN progresses very slowly. This is great news for patients, who can usually expect to live a normal life without complications, as long as they remain under the care of a doctor who can perform regular testing to ensure kidney function stays within an acceptable range. However, there are some more aggressive forms of IgA nephropathy that can lead to kidney failure within just years of diagnosis. Most sources point to about 30-50% of IgAN patients progressing to end-stage renal disease at some point. This means that up to 70% of formally diagnosed IgAN patients will never face dialysis or transplantation.

It is impossible to predict which course the disease will take for any single individual, but there are several factors that have been identified which can give a clearer picture of a patient’s risk of progression. Some of the considerations for increased risk include elevated proteinuria, hematuria, hypertension, low eGFR, and increased serum creatinine. Evidence suggests that controlling proteinuria and hypertension with the use of different therapies can result in a better prognosis.

There is currently no cure or standard treatment for IgA nephropathy. Because each patient is so different, your nephrologist will work with you individually to determine the best course of action. This may include simply monitoring, making lifestyle changes such as a kidney-friendly diet, adding certain supplements like fish oil or probiotics, increasing or reducing your level of exercise, or sometimes medication like corticosteroids and ACE inhibitors. Some patients may require dialysis immediately upon diagnosis or sometimes even before diagnosis, although this is very rare and only happens in extreme cases.

It is not currently possible to prevent IgA nephropathy from occurring, since researchers haven’t nailed down an exact cause for the disease. However, there are many things we can do to help slow down or stop the disease from progressing. Ask your nephrologist what changes you should make to have the greatest impact on your health. If you can, seek help from a renal dietitian who can suggest a personalized diet plan based on your lab work and needs. Some of the easiest and most common changes IgAN patients can benefit from include swapping animal protein for plant-based protein, reducing your sodium intake, watching your potassium and phosphorus, staying hydrated, resting well, and reducing stress.

The key to living a full life with IgA nephropathy is educating yourself, empowering yourself, and doing your part. Living with a chronic condition is scary and exhausting, but as patients we have the ability to advocate for ourselves, practice self-care, and manage our symptoms. Lots of progress is being made in the study of renal diseases, and researchers are learning more every day. There have been several recent breakthroughs in therapeutics meant specifically for the treatment of IgAN. Hope is not lost, and we are lucky to be living in a time in history when so many advancements are being made in medical technology. In the meantime, we can do our best to monitor and manage this disease with the help of doctors, specialists, dietitians, and each other.