AJ’s Journey with pediatric FSGS

AJ was just two years old when his parents first noticed symptoms of Nephrotic Syndrome. Later, a biopsy showed scarring on his kidneys, leading his diagnosis to change from Minimal Change Disease to Focal Segmental Glomerulosclerosis (FSGS).

Becky’s Journey with FSGS

Becky was pregnant when she first discovered symptoms of Nephrotic Syndrome. A few months after giving birth, a biopsy confirmed she has FSGS. Becky has now been spilling protein for five years without remission.

Sabrina’s Journey with Minimal Change Disease

Sabrina was in high school when she noticed that her clothes were getting a little tight. At first, she brushed it off as typical for her age. Then, she woke up one morning, collapsed, and was in the emergency room by the end of the day. She was diagnosed with Nephrotic Syndrome – Minimal Change Disease.

Brianna’s Journey with FSGS

Brianna’s parents, Bill and Lisa, describe their daughter’s experience with FSGS kidney disease. Brianna was two and a half years old when she first experienced edema (swelling caused by excess fluid trapped in the body’s tissues). She later experienced kidney failure.

Discover the Treatment That’s Right for You

Clinical trials and research studies are vital in the mission to find better treatments and cures for Nephrotic and Nephritic Syndrome. When you participate in a clinical trial, not only can you gain access to cutting-edge treatment options and expert care, but patient participation in clinical trials is the only way that new treatments will become possible. Your participation could be the key to a medical breakthrough that brings us all closer to the cure. You may be amazed at all the trials that you are eligible for!

Frequently Asked Questions

Nephrotic Syndrome is not a disease itself, but rather a group of signs and symptoms that result from damage in the part of the kidney that filters blood (glomeruli).

Common symptoms include:

  • Foamy urine (called proteinuria) caused by protein “spilling” into the urine
  • Severe swelling in parts of the body, most noticeably around the eyes, hands, feet, and abdomen (called edema)
  • Weight gain due to a buildup of extra fluid
  • Fatigue
  • Loss of appetite
  • Low levels of protein in the blood (hypoalbuminemia)
  • Higher than normal fat and cholesterol levels in the blood (hyperlipidemia)

Nephrotic Syndrome can typically be diagnosed with a urine test.

Nephrotic Syndrome can be “primary” or “secondary” in nature.

Diseases that affect only the kidneys are called primary causes of Nephrotic Syndrome. Doctors often call these diseases “idiopathic,” which means that they arise from an unknown cause. Some of these diseases include:

  • Minimal Change Disease (MCD) – most common in children
  • Focal Segmental Glomerulosclerosis (FSGS)
  • Membranous Nephropathy (MN) – most common in adults
  • IgA Nephropathy (IgAN)

Secondary Nephrotic Syndrome is caused by an underlying, systemic condition like diabetes, lupus, HIV, and others.

The Kidney Health Gateway is a website owned and operated by NephCure Kidney International. The purpose of this website is to help patients with rare forms of primary Nephrotic Syndrome get connected to expert care and cutting-edge treatment options. By answering a few questions about you or your loved one’s condition, we can provide you with a list of clinical trials and/or expert doctors in your area.

If you have additional questions, please visit NephCure.org or email Info@NephCure.org.


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