Information for Patients and Families

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Focal and Segmental Glomerulosclerosis (FSGS)

What is Focal Segmental Glomerulosclerosis ?

Focal Segmental Glomerulosclerosis (FSGS) is a disease that affects the kidney’s filtering system (glomeruli) causing scarring and loss of large amounts of protein in the urine. FSGS is a common cause of nephrotic syndrome.

Who gets Focal Segmental Glomerulosclerosis?

Children and adults of all ages and races can get FSGS.   

What causes FSGS?

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 such as parvovirus or HIV/AIDS, or other kidney diseases that lead to scarring.

What are some of the symptoms of FSGS?

FSGS causes excessive loss of protein in the urine which may lead to:

  • Nephrotic syndrome (edema, low protein in the blood, high cholesterol)
  • Kidney failure

How is FSGS diagnosed?

With information obtained from blood tests, urine tests and a kidney biopsy, a physician can determine if a person has FSGS.

What is the treatment for FSGS?

Very few treatments are available for patients with FSGS. Most commonly, patients are treated with drugs called steroids and with blood pressure medicines. Prednisone and prednisolone are the most common steroid medicines used to treat FSGS. Some patients respond well to other medicines that suppress the immune system. To date, there is no treatment that is effective for every person with FSGS. Patients who do not respond to routine therapies are at risk for kidney failure.

Frequently Asked Questions

I have FSGS.   Are my children at risk?

In some cases, FSGS does run in families, but most cases of FSGS are not inherited and cannot be passed down to children, and it is not contagious. 

What can I expect to happen if I have FSGS?

This varies from person to person. In general, there are several possible outcomes:

  1. It may continue unchanged for many years, requiring only regular check-ups with blood tests.
  2. It may go away on its own in rare cases.
  3. The disease may worsen.
  4. In some cases kidney failure develops and dialysis or transplantation is necessary

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