Newly Diagnosed? Learn About Nephrotic Syndrome in Adults Nephrotic Syndrome is not a disease itself, but an umbrella term for the collection of symptoms that occur when the kidneys’ filters (called glomeruli) become injured and cause protein, and sometimes blood, to “leak” out of the bloodstream and into the urine. The term Nephrotic Syndrome covers a wide range of protein-spilling kidney diseases, such as: C1Q Nephropathy C3 Glomerulopathy Focal Segmental Glomerulosclerosis (FSGS) IgA Nephropathy IgM Nephropathy Membranoproliferative Glomerulonephritis (MPGN) Membranous Nephropathy Minimal Change Disease Other rare glomerular kidney diseases Many adults who have been diagnosed with primary Nephrotic Syndrome or different protein-spilling kidney disease may have been experiencing symptoms for a long time without realizing it. Nephrotic Syndrome can happen without a known cause, be genetic, or have environmental causes. Many diseases that cause Nephrotic Syndrome are chronic, and if the protein-spilling is not controlled, it can lead to permanent and irreversible kidney damage and, ultimately, kidney failure. Symptoms of Nephrotic Syndrome in adults may include: Swelling of the eyes, extremities, and abdomen (edema) High levels of protein in the urine (proteinuria) Sometimes, blood in the urine (hematuria) Low levels of albumin (protein) in the blood High blood pressure (hypertension) High cholesterol Active protein-spilling leads to kidney damage. The priority for every patient should be to stop or reduce protein in their urine. To learn more about what is causing a patient to have Nephrotic Syndrome, doctors should perform a kidney biopsy. After a biopsy, a patient can usually be diagnosed more specifically, based on what can be seen under the microscope. The most common primary cause of Nephrotic Syndrome in adults is a disease called Focal Segmental Glomerulosclerosis (FSGS). If you have been diagnosed with Nephrotic Syndrome, FSGS, IgA Nephropathy, or a different protein-spilling kidney disease, NephCure is here for you. Follow these steps to get help and information. 01 Sign up with NephCure Once you register with us, you’ll receive information about your diagnosis and potential treatment options. We’ll also contact you to see if you’d like to be connected to a patient support volunteer who can help you navigate your disease journey. 02 Watch “Nephrotic Syndrome 101” Our short video on the basics of Nephrotic Syndrome will help you better understand what to expect with your diagnosis. 03 Find a Specialist Nephrotic Syndrome is a rare disease, so finding a kidney specialist (called a nephrologist) who routinely treats patients like you is important to obtaining the best care possible and reducing your potential for kidney damage. Ready to learn more about your disease? Visit our disease guides, learn about your treatment options, or join an upcoming virtual support group.