You or your child has been diagnosed with focal segmental glomerulosclerosis or FSGS—a rare kidney disease that affects how thoroughly your organ filters excess waste. The diagnosis is confirmed via biopsy. In a book published on the subject, it states, “FSGS is a common cause of nephrotic syndrome, accounting for 40% of cases in adults and 20% in children. FSGS occurs more frequently in males and Black patients, with males affected approximately 1.5 to 2 times more often than females.” A FSGS diagnosis can be overwhelming; a treatment can help.
Misdiagnoses Happen
At the 2025 NephCure Health Equity Conference, one mother explained what it was like when her son was misdiagnosed at age four. “He had swelling in his eyes, his stomach. He couldn’t open his eyes,” she said. “They gave him all these allergy tests, but we knew it was something different, so we went back.”
This time, the parents saw their son’s pediatrician, and she knew it was nephrotic syndrome. “My husband and I are looking her saying, ‘What is nephrotic syndrome?’ getting ready to look it up on our phones. She said, ‘Put your phones away. We need to get your son under the care of a pediatric nephrologist right away.”
When Are Children Diagnosed?
According to the National Kidney Foundation, children are often diagnosed with nephrotic syndrome between the ages of two and nine. “Swelling in the legs, abdomen, and around the eyes is usually the first sign of nephrotic syndrome in children. Swelling around the eyes may be confused with allergies. However, urine tests that show large amounts of protein usually point to nephrotic syndrome.”
FSGS is the second most common cause of nephrotic syndrome in children. FSGS most often occurs in older children and adolescents.
What Kind of Pediatric Nephrologist Are You?
Another mother said, “So many people don’t really know enough about rare kidney disease, even nephrologists. I learned last year in the summit that there’s a difference between pediatric nephrologists who know about kidney disease,” she explained.
“There are also pediatric nephrologists who know about rare kidney disease, and I didn’t realize the difference.” She explained that they had consultations with six pediatric nephrologists before they found the right fit.”
“Is this person knowledgeable about what my kid has or not, and that really helped me decide, am I going to have a relationship with this person or am I moving on?” she said.
Treating a Child is a Group Effort
When treating children who are living with FSGS, treatment plans are a bigger group effort as opposed to the effort of 1 or 2. While many adults can navigate new treatment plans alone or with the help of a family member or significant other, the treatment plan for children “must extend beyond the child to the family system”, says Dr. Daryl O. Crenshaw, MD, FACP, FASN, FASH, a board-certified nephrologist who practices in Thomasville, GA. These professionals are part of their care ecosystem.
- Pediatric Nephrologist
- Dietician
- Social Workers
- Primary Care Doctor
That doesn’t mean that the patients themselves are to be overlooked. “Children engage best when care is framed as something they can do rather than something being done to them,” says Crenshaw. Depending on their age, involving your child in their treatment may be the best way to get them to understand what is going on. It also helps build trust and develop confidence, which will take you a long way.
Finding Community and Support
“Our pediatric nephrologist gave us the rundown from A to B about athletics. That it was terrifying, but it prepared us for what we were going to be up against,” the first mom said. “I’m like, okay, organization. I think I got this under control. I’m a mom. I can do it all, but every time my son relapsed, it was a different type of relapse.”
She knew that support and community would be critical to her journey. There were overwhelming fears about having her child labeled as “sick” at school. Her pediatric nephrologist initially recommended the NephCure’s walk in her city, but the family wasn’t ready. Two years later, she circled back and got the information.
“So we went to the walk, and then when we met the families, and everyone from NephCures, our lives really changed. At that point, because it made a difference,” she said.
Involve Your Child in Their Treatment
- Give them an active role in their treatment and more broadly, their health.
- Understanding how certain foods or choices can impact them. It can help encourage them to remain adherent and honest with you and their provider.
Whether you’re working with an HCP on a treatment plan for yourself, your child, or a loved one, always remember that you are not powerless; you are a partner. If there are questions that you feel moved to ask, ask them; if you’re experiencing new or different symptoms, bring that up; if there are ways you think something can be going more smoothly according to your needs, limitations, and lifestyle, don’t be afraid to talk about it with your doctor.
When creating a treatment plan, one of the most important things to remember is that it’s a collaborative effort. Both you and your doctor want what is best for you, and the best treatment is the one you are most likely to adhere to.
Partnering With Your Doctor as an Adult
According to Dr. Crenshaw, “Treatment guidelines provide structure, patients provide context,” he said. “The real art [of creating a treatment plan] is adjusting principles for the patient in front of me—whether that means accounting for their comorbidities, socioeconomic challenges, or medication adherence barriers.”
It helps to do the following, so your nephrologist has as much information as possible:
- Keep track of your symptoms
- Write down any questions you might have for your provider beforehand
- Bring a list of any medications you currently take.
In addition, you may discuss your day-to-day life and your medical history. As your treatment plan is being developed, your doctor may want to know more about your environment. How close is your access to fresh food? What are your transportation options? All these things affect your health.
Understanding these correlations can get patients to better stick to their treatment. “Adherence increases when I take time to connect the science to their story. Plans thrive when they feel personalized”, says Dr. Crenshaw.
Managing Your FSGS
- Eat a low-sodium diet.
- Consume plenty of fruits and vegetables.
- Reduce alcohol consumption.
- Keep blood sugar under control.
- Maintain a healthy weight.
- Exercise.
- Quit smoking.
Resources
Focal Segmental Glomerulosclerosis
National Kidney Foundation
Understanding FSGS
NephCure
