Diseases can damage the glomeruli, the tiny filtering units inside your kidney where blood is cleaned. Called glomerular diseases, they can have many different causes. Focal segmental glomerulosclerosis, or FSGS, is one type of glomerular disease which is defined by increased scarring and damage of some of the filtering units in certain sections of the kidneys. More men than women are diagnosed with FSGS, and the disease occurs more often in us than in folks of other races.
In the early stages of FSGS, there might not be any symptoms. When symptoms show up, they include:
- Swelling in the legs, ankles and around the eyes
- Weight gain due to fluid build-up
- Foamy urine caused by high protein levels in the urine (called proteinuria)
- High cholesterol
- Low levels of protein in the blood
- High blood pressure
Black Health Matters recently discussed FSGS with Kirk Campbell, M.D., a nephrologist at Mount Sinai Hospital in New York City, and this is what he shared with us:
Black Health Matters: What is FSGS? What causes it?
Kirk Campbell: FSGS is essentially a term that refers to scarring of the kidneys. It’s from a variety of different causes. Some causes are genetic. Some are related to hypertension or high blood pressure. In some cases, there is no clear cause for the FSGS, which is called primary FSGS. It can happen in people with diabetes. It can happen due to medications and infections. Eventually the scarring causes kidney function to deteriorate and leads to dialysis or a kidney transplant. It’s the most common type of primary kidney disease. And it is one of the more prevalent primary kidney diseases in African Americans.
Why are we diagnosed with it more?
We believe a big part of why it disproportionately affects African Americans is a genetic predisposition. Some gene mutations that cause FSGS are much more common in individuals of African American descent than in other groups. This information is not in the public domain because we don’t know what to do with this information. If I tell you, you have a 30 percent chance of getting this disease, what are you going to do with this information? Is it just going to worry you? Will it create bias as it relates to the other care you get? We’re doing research on how we can better communicate results of this diagnosis.
How is FSGS treated?
Right now, a lot of the interventions are tailored toward keeping the blood pressure under control—anti-hypertensive medications that can protect the kidney. Steroids target the immune system and try to bring the disease under control. But a lot of times these treatments are not very effective. Currently there are no medications approved specifically for the treatment of FSGS.
So, what’s being done about that?
We’re trying to develop better treatment options. It’s also why we’re trying to get more people of color into clinical trials. We’re sort of in an unprecedented era. About five years ago, there were probably two clinical trials for FSGS, and now there are more than 15. We’re sort of in the era where we’re hopeful. This is in the environment where we don’t have FDA approval yet for treatment—but a lot of these trials are going on now. This is stirring a lot of excitement. All of the trials are addressing different mechanisms of action. Now it’s about getting the message out to communities of color.
How do we do that?
There are number of initiatives that are specialty focused. From the nephrology community’s perspective, it’s bringing together patient advocates, the federal government, professional societies and clinics. It’s about educating physicians because it’s not just patients alone; they can’t enroll themselves in studies. We need local regional access. We need to better train the next generation of clinicians to make sure they refer African Americans to the trials. We need to have better outreach.
I have a good friend who isn’t a nephrologist who sees the same thing in his clinic. We talk about it all the time. The issue of low African American clinical trial participation is not unique to nephrologists, so hopefully we can do something to change that.