Focal segmental glomerulosclerosis is a rare kidney disease that affects 7 out of 1 million people, according to the American Kidney Fund, and is most common among the Black and Pacific Islander populations. Asking the right questions can bring clarity and understanding to FSGS. We spoke to Dr. Daryl O. Crenshaw, MD, FACP, FASN, FASH, to better understand the condition and identify essential questions you might want to ask your HCP or nephrologist.
Table of Contents
What is FSGS?
A healthy kidney oversees filtering the blood in your body to remove and flush waste like proteins, toxins, excess water, and more. Focal segmental glomerulosclerosis, or FSGS, is a condition where parts of the kidney that filter waste are damaged or scarred. Because of this damage, some of the waste that your kidneys should be filtering leaks out into urine.
Dr. Crenshaw, a board-certified nephrologist in Thomasville, GA, brilliantly uses the analogy of rice in a strainer. “Imagine your kidneys act as the strainer holding in rice, which represents the essential substances your body needs,” he says.
“The more damaged your ‘strainer’ is, the easier it is for ‘grains of rice’ (essential substances) to pass through and enter the urine. Accumulation of vital substances in your urine can cause health complications, especially over time.
What are the Symptoms of FSGS?
- Swelling could be in the legs, ankles, and even around the eyes.
- Weight gain is due to fluid buildup
- Foamy urine from protein buildup, called proteinuria
When should I see a doctor?
Note: If you are experiencing any of the symptoms listed above, please get in touch with your HCP as soon as possible.
Are There Different Types of FSGS?
According to the Mayo Clinic, there are four types of FSGS.
- Primary FSGS. Many people diagnosed with FSGS have no known cause for their condition. The condition is called primary (idiopathic) FSGS.
- Secondary FSGS. It may occur because of another disease, such as diabetes or sickle cell, drug toxicity, obesity, or other kidney diseases. But controlling the underlying cause may slow the progression.
- Genetic FSGS, a type of kidney disease caused by mutations in genes that play a role in the structure and function of the glomeruli, the tiny filters in the kidneys.
- Unknown FSGS. Despite Clinical evaluation, the underlying cause has not been identified.
Questions to ask:
If I have diabetes or sickle cell disease, could I be at risk for FSGS?
Does my lupus put me at risk for FSGS?
What tests should I have annually?
One of my family members has FSGS. Does that mean I may have it too?
How early do I need to test my children?
What Kind of Health Complications Can Occur from FSGS?
- Nephrotic Syndrome is a condition that causes you to release an excessive amount of protein in the urine (pee). Nephrotic syndrome usually results from a problem with your kidneys’ filters (glomeruli). Glomeruli (glo-mare-yoo-lye) are tiny blood vessels in your kidneys. If you have nephrotic syndrome, losing different proteins may cause various problems. Some proteins help prevent blood clots. When you lose those proteins in your pee, blood clots can form.
- End-stage kidney Disease means your kidneys can no longer filter waste from your blood. It is often the final stage of CKD, but it can also develop suddenly or happen as a result of injury. Dialysis and transplant are the options then.
If You Don’t Have Symptoms: Be Proactive
Dr. Crenshaw encourages patients to be proactive and ask the right questions to understand their kidney health better.
Can you run the following test?
- Complete blood work
- Glomerular Filtration Rate (GFR)
- Creatinine
- Urine test to measure the amount of blood and protein in proteinuria
Once you have the tests, it is critical to keep track of your results. Then ask the following?
What are the results of my tests? What do they mean?
When should I come back for follow-up testing?
Dr. Crenshaw gives a complete breakdown of the CKD stages here. All this information will help you understand how well your kidneys are functioning currently and whether you are at higher risk for chronic kidney disease in the future.
Review Your Current Medications
Suppose you are someone who has high blood pressure, diabetes, and other comorbidities such as Hep B, Hep C, HIV, syphilis, or has been exposed to certain infections (including COVID-19). In that case, it’s essential to know that you may be predisposed to lower kidney function.
Will any of the medications I am currently taking hurt my FSGS diagnosis? Or my kidneys (if you are being proactive)?
Are there OTC medications I should avoid?
What about supplements? Are they safe to take?
Should I Consider Genetic Testing?
Dr. Crenshaw encourages everyone with African ancestry to request testing to check for any genetic disposition. There are several genetic variants related to kidney disease. One that explicitly impacts those in our community is called an APOL-1 variant, which could directly affect the progression of FSGS, heart disease, and other conditions. It has been described as an accelerator that causes your disease to progress at a faster rate.
Ask your nephrologist:
What are the benefits of genetic testing?
Do I need a referral for genetic counseling?
Does my insurance cover this?
Are there other things I need to know about genetic testing, including any possible disclosures to life insurance companies?
How do I find a good nephrologist?
Your doctor may not automatically refer you to a nephrologist. However, you can begin researching on your own, especially if your plan doesn’t require a referral. Read reviews before you decide. Tap into kidney organizations, connect with their patient and support networks for ideas as well. Check out our Nephrologist guide too.
FSGS can become a serious condition, so regularly monitoring your kidney function is essential for managing kidney health. Dr. Crenshaw shared that about 90% of people in the United States have kidney disease and are unaware of it. A statistic that is sure to wake us up about our kidney health: asking the right questions is key to understanding FSGS and its possible effects. It is not only a great way to get ahead of your kidney health, but also to encourage others to do the same.
Additional Reporting by Christine Jean-Louis
Resources
National Kidney Foundation: Genetic Variants and Kidney Disease
