Dear Alice,

I have a kidney disease which my doctors have been unable to diagnose. Where is a good place to look for some help? My doctors have told me it is nephrotic syndrome, but they don't know what is causing it. Can you help?

Dear Reader,

Nephrotic syndrome is a disease that primarily affects the kidney’s ability to filter the blood properly. It occurs when tiny tubular filters in your kidneys, called glomeruli, fail to remove waste from the blood and pass it on to the urine. When glomeruli are damaged, they may also fail to maintain normal quantities of proteins in the blood. Therefore, this condition often causes unusually high levels of protein in urine as well as high cholesterol and fat in the bloodstream. This loss of protein and reciprocal retention of fluids and waste results in edema, which is also commonly referred to as bloating or swelling, particularly in the ankles and feet. You may also experience symptoms such as foamy urine, fatigue, and loss of appetite. Diagnoses are primarily made through blood or urine analyses.

Nephrotic syndrome has many causes, all of which fit into one of two categories: primary or systemic. Primary causes include all diseases that exclusively affect the kidneys, such as membranous nephropathy, focal segmental glomerulosclerosis (FSGS), and minimal change disease. The condition may also occur when systemic causes are present, such as diabetic kidney disease, certain non-steroidal anti-inflammatory medicines, systemic lupus erythematosus, HIV, hepatitis, and amyloidosis. Whether the cause of your nephrotic syndrome is considered of the primary or secondary (systemic) class, the symptoms described above are consistent across both categories. If there remain any lingering questions or concerns regarding the specific cause(s) of your symptoms after your blood and urine are analyzed, your health care provider may suggest a kidney biopsy. Determining the root cause of nephrotic syndrome is essential in the treatment process.

Once you and your provider have isolated the specific cause(s) of your condition, you can move on to the treatment phase. In addition to treating the direct cause behind your case of nephrotic syndrome, your health care provider may prescribe blood pressure medication to control your symptoms. Your provider may also recommend taking diuretics to help your kidneys flush excess liquids and other waste to the urine for elimination from the body. Because nephrotic syndrome may make you more susceptible to infections, blood clots, and acute and chronic kidney failure, you and your provider may need to communicate more frequently than normal throughout the course of your treatment. Your provider may request that you write down the progression of your symptoms overtime in between appointments.

You may want to consider reducing your sodium intake to reduce fluid retention and swelling. A low-fat and low-cholesterol diet may also improve symptoms for some people. For more information and support, consider scheduling an appointment with a kidney specialist (also referred to as a nephrologist) and check out the American Kidney Fund and the NephCure Foundation. Your primary health care provider can also help you find a specialist.

Nephrotic syndrome can be difficult to cope with. However, the moment you and your doctor are able to pinpoint the direct cause of your condition, you will be able to move toward recovery.


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