NEPTUNE

Information for Patients and Families

Frequently Asked Questions

Focal and Segmental Glomerulosclerosis (FSGS)

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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Minimal Change Disease (MCD)

What is the long-term outlook for a child with Minimal Change Disease?

It is important to remember that most children and adults with this disease will not suffer long term kidney damage.  If the disease does not recur for three years after the first spell, there is a good chance that it will not return. While some people will have only one attack of the disease, most children and adults will have at least two episodes. Even though there is no specific cure, most children will eventually "outgrow" Minimal Change Disease, with fewer and fewer episodes through the years until it no longer returns.

What if a person with minimal change disease is treated with prednisone and it doesn’t work?

If prednisone does not work or if the side effects of the medications are too uncomfortable, the doctor may recommend another kind of medicine to lower the immune system function. Your doctor can discuss in detail the other treatment options. Diuretics may be prescribed to help the the body get rid of extra salt and water.

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Join the Contact Registry for: Minimal Change Disease (MCD)

 

 


Membranous Nephropathy (MN)

What is the outlook for a patient with Membranous Nephropathy?

Interestingly, MN sometimes goes away on its own. During the first 5 years after onset, this may happen in 1/3 of cases, even without any particular treatment. It is more likely if there is a mild or moderate amount of protein in the urine, and less likely if there is a large amount of protein in the urine. Another 1/3 of people seem to have a very stable course over many years, with no worsening and no improvement. And the remaining 1/3 have a slow decline in kidney function or worsening in the amount of protein in the urine, with up to 40% progressing to kidney failure after 15 years.

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Join the Contact Registry for: Membranous Nephropathy (MN)