FSGS causes loss of protein in the urine which may lead to:
- Swelling in parts of the body (edema) most visible in the head, hands, feet and belly
- Low level of protein in the blood (hypoalbuminemia)
- High blood cholesterol (hypercholesterolemia)
- High blood pressure (hypertension)
- Kidney failure
There is no single cause of FSGS. When the cause is not known it is called idiopathic or primary FSGS.
In some patients FSGS may be the result of a genetic or inherited disease, an infection, or another kidney disease that leads to scarring.
Very few treatments are available for patients with FSGS. Most often, patients are treated with drugs called steroids (prednisone or prednisolone) and with blood pressure medicines. Some patients respond well to other medicines that suppress the immune system. To date, there is no treatment that works for every person with FSGS.
Patients who do not respond to treatments are at risk for kidney failure. The NEPTUNE study aims to find out more about the disease for better treatments.
People of all ages can get minimal change disease, though it mostly affects young children in the pre-school age group.
The most common symptoms are swelling around the eyes, face, belly, and legs. A person with minimal change disease may make less urine, gain weight, and become swollen during active phases of the disease.
For people with large amounts of protein in the urine, medications to suppress the immune system are often used. These include corticosteroids, cyclosporine, tacrolimus, and cyclophosphamide.
Limiting salt in the diet and using medications to help the body get rid of extra salt and water are often helpful. Blood pressure medications that can decrease protein in the urine are also used.
Sometimes medicines are prescribed to decrease the chance of blood clots, which can be a problem in patients with nephrotic syndrome and membranous nephropathy. The NEPTUNE study aims to understand membranous nephropathy to develop better treatments.