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Nephrotic Syndrome (NS)

Nephrotic Syndrome (NS) is not a disease itself, but rather an umbrella term for the collection of signs and symptoms that result from damage in the kidney’s filters, called glomeruli. This damage causes protein to leak into the urine, a condition called proteinuria. The glomeruli filter blood as it passes through the kidneys, separating things the body needs from those it doesn’t. One of these things your body needs is protein. Healthy glomeruli keep blood protein (mainly albumin) from passing through and spilling into the urine. Damaged glomeruli allow too much blood protein to pass through the kidneys and leave the body in the urine, leading to Nephrotic Syndrome.

Who Gets NS

Although primary NS is a relatively rare condition, anyone can get it. NS is one of the most common contributors of rare kidney disease (RKD).

Nephrotic Syndrome can affect adults and children of both sexes and of any race/ethnicity.

NS Facts

Males are more likely to be diagnosed than females with NS. Here are some additional facts about NS:

50-57%

of African American patients have FSGS, the most common NS disease

3 / 100,000

Adults each year diagnosed with primary NS

Most Common

(MN is the most common primary form of NS in adult Caucasian patients

2-4 / 100,000

Children are diagnosed with primary NS in North America (higher rates in other countries)

Signs and Symptoms

Some signs and symptoms of NS are common in most Nephrotic Syndrome patients.

Patients with NS often experience:

  • High levels of protein in the urine (proteinuria, also known as “spilling” or “leaking” protein)
  • Low blood protein levels due to protein spilling into the urine
  • Foamy urine
  • Swelling, typically around the eyes, feet, and hands (edema)
  • Weight gain from excess water
  • Sometimes high blood pressure (hypertension)
  • Sometimes high blood cholesterol levels

Diagnosing NS

Doctors diagnose NS using a variety of methods:

Urinalysis: determines the amount of protein in the urine

Blood Work: determines the levels of creatinine, albumin, cholesterol, and many other factors examined in order to rule out other causes

Glomerular Filtration Rate (GFR): an estimator of kidney function through calculating blood creatinine levels with urine protein levels

Kidney Biopsy: sometimes performed to examine a small portion of the kidney under a microscope

Renal Ultrasound or CT Scan: sometimes performed to get a closer look at the kidneys

Your Treatment Options

It is important to see a kidney specialist on a regular basis to monitor kidney function, degree of proteinuria, cholesterol, and blood pressure. The most common drug used to treat Nephrotic Syndrome is prednisone, a type of corticosteroid. Various types of immunosuppressants, or drugs that suppress the immune system, as well as blood pressure medications are also used in certain cases.

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Clinical trials are another treatment option.

Your doctor helps you find the right study for you. These trials test more targeted treatments with potentially lower risks of side effects.

Some clinical trials enroll patients, based on their genetic testing results, to test the effectiveness of precision-based therapies targeted to specific genetic changes.

Explore

Tips For Living With NS

Patients with NS benefit from supportive measures including:

Exercise

Regular, moderate activity helps manage your blood pressure and weight and improves your overall well-being.

Prescription Regimen

Follow your doctor’s instructions and take your medicines as prescribed.

Regular Check-Ups

See your doctor as scheduled to monitor your kidney function and quickly address any changes.

Support

Get help coping with the challenges of living with NS through support groups. Connect with others who understand your journey, share experiences, and find comfort in knowing you’re not alone.

Nutrition

Eating a kidney-friendly diet can help manage the symptoms and progression of your RKD. Learn more about a kidney-friendly diet and get our cookbook.

Your Nephrologist May Also Recommend

1

Diuretics

Diuretics are important as they help manage fluid retention and edema, which are common complications of kidney dysfunction.

2

Anticoagulants

Anticoagulants are essential for rare kidney disease patients to prevent the formation of blood clots.

3

Medications

Blood Pressure medications help to lower high blood pressure. Statins to lower the cholesterol level.

4

Vitamins

Vitamins play a crucial role in supporting overall health and mitigating potential complications.

Related Resources

Informational Documents

Low Phosphorus Diet Guidelines: For Patients with Rare Kidney Disease

Fact Sheet

Congenital Nephrotic Syndrome & Infantile Nephrotic Syndrome

Video

The History & Innovation of C3G: Patient Summit Seminar with Dr. Corey Cavanaugh

Educational Materials

School Accomodations

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