FSGS: What You Need to Know

Focal segmental glomerulosclerosis (FSGS) is a rare kidney disease that causes scarring of the glomeruli, the tiny filtering units in the kidneys. Over time, this scarring can damage the kidneys and lead to kidney failure.

FSGS can affect people of all ages, but it is most common in children and young adults. It is also more common in African Americans than in other racial and ethnic groups.

Causes of FSGS

The exact cause of FSGS is unknown, but it is thought to be an autoimmune disease, which means that the body’s immune system attacks its own tissues. Other possible causes of FSGS include:

  • Viral infections, such as HIV and hepatitis C
  • Medications, such as nonsteroidal anti-inflammatory drugs (NSAIDs) and pamidronate
  • Genetic factors
  • Obesity
  • High blood pressure

Symptoms of FSGS

The symptoms of FSGS can vary depending on the severity of the disease and the organs that are affected. Some people with FSGS have no symptoms, while others may experience symptoms such as:

  • Protein in the urine (proteinuria)
  • Blood in the urine (hematuria)
  • Swelling in the hands and feet (edema)
  • High blood pressure
  • Fatigue
  • Back pain

Diagnosis of FSGS

FSGS is diagnosed based on a combination of medical history, physical exam, blood tests, and urine tests. A kidney biopsy may also be recommended to confirm the diagnosis and assess the severity of the disease.

Treatment of FSGS

There is no cure for FSGS, but there are treatments that can help to slow the progression of the disease and manage the symptoms. Treatment options include:

  • Blood pressure medications
  • Cholesterol medications
  • Immunosuppressive medications
  • Diet changes
  • Lifestyle changes

In some cases, people with FSGS may progress to end-stage renal disease (ESRD), which means that their kidneys stop working properly. If this happens, dialysis or a kidney transplant may be necessary.

Prognosis for FSGS

The prognosis for people with FSGS varies depending on the severity of the disease and the organs that are affected. With early diagnosis and treatment, many people with FSGS can live long and productive lives. However, some people with FSGS may progress to ESRD.

What can you do to manage FSGS?

If you have FSGS, there are a number of things you can do to help manage the condition and improve the prognosis:

  • Take all medications as prescribed by your doctor.
  • Follow a healthy diet.
  • Maintain a healthy weight.
  • Control your blood pressure.
  • Control your cholesterol.
  • Avoid smoking and excessive alcohol consumption.
  • Get regular exercise.
  • Follow up with your doctor regularly for monitoring and treatment.

If you have any questions or concerns about FSGS, be sure to talk to your doctor.

You are not alone

FSGS is a rare disease, but there is a supportive community of people living with FSGS and their families. There are also a number of organizations that provide resources and support for people with FSGS and their loved ones.

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