What are some symptoms of FSGS?
FSGS causes inefficient filtering of wastes from the blood which in return causes the following symptoms:

      • Pronounced swelling in parts of the body (edema) most visible in the head, hands and feet.

      • Low level of water soluble protein in the blood (hypoalbuminemia).

      • Large amounts of protein in the urine.

How many people have reached End Stage Renal Disease (ESRD), which describes a patient who is on dialysis or living with a transplant, as a result of FSGS?
NephCure estimates there are currently 20,078 people living with ESRD due to FSGS (2008). Chronic Kidney Disease (CKD) sufferers in various stages of FSGS number in the tens of thousands, at least. In total, 26 million Americans suffer from CKD, FSGS being one of the most common forms.

Currently there are more people nationwide suffering from FSGS than Cystic Fibrosis.

How does FSGS affect children?

FSGS is the second leading cause of kidney failure in children.

What is the societal cost of FSGS and its disease group?
The FSGS disease group (defined as Minimal Change Disease, FSGS and Membranous Nephropathy, among others) accounts for approximately 12% of prevalent ESRD cases (2005) at an annual cost in the United States of more than $3 billion.

Additional FSGS facts:
• 50% of FSGS sufferers who do not respond to treatment will reach ESRD within 5 years.

• Every year 5,400 patients are diagnosed with FSGS.

• In 2007 alone, 1,117 kidney transplants were performed on FSGS patients.

• As of August 22, 2008 3,818 FSGS patients were waiting for a kidney transplant. Of these 3,818 individuals, 653 had already received at least one transplant which has since failed.

• FSGS is the most prevalent acquired kidney disease leading to transplantation among pediatric patients, the most prevalent group in the dialysis registry.

• FSGS patients comprise 14.4% of pediatric dialysis patients.

• NephCure estimates that young African American males are at a five times higher diagnosis rate then young Caucasian males.

What are current FSGS treatment methods?
Very few treatments are available for patients with FSGS. Most commonly patients are treated with steroid regimens, most of which have very harsh side effects. Some patients have shown to respond positively to immunosuppressive drugs as well as blood pressure drugs which have shown to lower the level of protein in the urine. To date, there is no common effective treatment or cure and there are no FDA approved drugs to treat FSGS.

Is a kidney transplant the answer for FSGS patients?
Unfortunately, it is not always an answer. FSGS can attack the new kidney post-transplant. Reoccurrence can happen within hours to weeks of the transplant. As time goes by, reoccurrence becomes more unlikely.