What Scientists are Saying
About Your FSGS

More than 100 researchers and doctors sat watching slides in a darkened hotel ballroom outside of Washington DC recently, part of an “A Team” of experts whose names most FSGS patient families would not recognize.  They may not know your name either, but rest assured they were talking about you.

Because behind the highly technical sentences they spoke and the presentation slides so indecipherable to a lay person were some important developments to patients suffering from FSGS and glomerular injury.

From the lectern and behind the scenes, here is what the blue ribbon group said that you and all FSGS patients should know:

- You should be talking to your nephrologist about entering the nationwide FSGS Clinical Trial, which will test two drugs and some newer therapies, as well as collect material for vital studies.

- There are new treatments in the pipeline; with special interest being generated by two of them -- retinoids (already being used successfully in treating acne) and numerous anti-fibrotic agents aimed at preventing the scarring that destroys kidneys.

- Genetic research into FSGS is exploding because it may unlock the disease mechanism and you probably should be tested to see if your FSGS is the result of a genetic mutation. Those results may be important if you need a transplant.

- Kidney biopsy remains the best way to determine the status of FSGS and help guide treatment, and in most cases it is an overwhelmingly safe procedure.

- There has been, as one expert put it, “an explosion of interest” in the podocyte, a cell that helps create the kidney’s filter. Said one study: you lose podocytes, you lose kidney function. A diagnostic urine test may be on the way for podocyte loss.

- There is an undercurrent of impatience among many researchers and some are expressing the need for more and quicker results, more studies on humans versus animals, and more awareness of FSGS developments among physicians and patients.

           
”It’s pretty exciting,” said Debbie Gipson, M.D., one of the principal investigators for the FSGS Clinical Trial after the meeting in Bethesda late in January. “FSGS and glomerular injury have captured the attention of the NIDDK and it is putting forth an effort and resources to make progress.”

The NIDDK (National Institute of Diabetes, Digestion and Diseases of the Kidney) hosted the meeting and the director of the kidney division, Josephine Briggs, M.D., told the group she had “high hopes” for the exchange of wisdom at the two-day session. She noted that while FSGS and glomerular injury were relatively uncommon, they impose an “enormous health burden.”

Dr. Briggs also thanked the NephCure Foundation for the “support and prodding” it provides in for advocating more research.