Many adults who have been diagnosed with primary Nephrotic Syndrome or another protein-spilling kidney disease may have been experiencing symptoms for a long time without realizing it.
Nephrotic Syndrome is not a disease itself, but an umbrella term for the collection of signs and 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.
Nephrotic Syndrome can happen without 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 include:
- Swelling of the eyes, extremeties, 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
To learn more about what is causing a patient to have Nephrotic Syndrome, doctors may choose to 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 or a different protein-spilling kidney disease, NephCure is here for you. Follow these steps to get help and information.
Once you register with us, you’ll receive information that will help you learn more about your diagnosis and your potential treatment options. We’ll also connect you with a local NephCure volunteer who can offer a listening ear and advice on living with your disease, as well as the best place to seek care and treatment for your condition.
Our short, ten-minute video on the basics of Nephrotic Syndrome, from patients themselves, will help you better understand what to expect with your diagnosis.
3. Talk to Kelly
Do you have a specific question about your diagnosis or need help understanding what comes next for you? Contact Kelly Helm, NephCure’s Assistant Director of Patient Advocacy. Kelly has been a part of the NephCure community for almost a decade, and she can personally help you navigate your journey.