{"id":61421,"date":"2025-10-29T17:05:38","date_gmt":"2025-10-29T21:05:38","guid":{"rendered":"https:\/\/blackhealthmatters.com\/?p=61421"},"modified":"2025-10-30T15:07:53","modified_gmt":"2025-10-30T19:07:53","slug":"create-a-fsgs-treatment-plan-that-works-for-you-or-your-child","status":"publish","type":"post","link":"https:\/\/blackhealthmatters.com\/create-a-fsgs-treatment-plan-that-works-for-you-or-your-child\/","title":{"rendered":"Create a FSGS Treatment Plan That Works For You or Your Child"},"content":{"rendered":"

You or your child has been diagnosed with focal segmental glomerulosclerosis or FSGS\u2014a rare kidney disease that affects how thoroughly your organ filters excess waste. The diagnosis is confirmed via biopsy. In a book<\/a> published on the subject, it states, \u201cFSGS 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.\u201d A FSGS diagnosis can be overwhelming; a treatment plan can help.<\/p>\n

Misdiagnoses Happen<\/h2>\n

At the 2025 NephCure<\/a> Health Equity Conference, one mother explained what it was like when her son was misdiagnosed at age four. \u201cHe had swelling in his eyes, his stomach. He couldn\u2019t open his eyes,\u201d she said. \u201cThey gave him all these allergy tests, but we knew it was something different, so we went back.\u201d<\/p>\n

This time, the parents saw their son\u2019s pediatrician, and she knew it was nephrotic syndrome. \u201cMy husband and I are looking her saying, \u2018What is nephrotic syndrome?\u2019 getting ready to look it up on our phones. She said, \u2018Put your phones away. We need to get your son under the care of a pediatric nephrologist right away.\u201d<\/p>\n

When Are Children Diagnosed?<\/h2>\n

According to the National Kidney Foundation<\/a>, children are often diagnosed with nephrotic syndrome between the ages of two and nine. \u201cSwelling 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.\u201d<\/p>\n

FSGS is the second most common cause of nephrotic syndrome in children. FSGS most often occurs in older children and adolescents.<\/p>\n

What Kind of Pediatric Nephrologist Are You?<\/h2>\n

Another mother said, \u201cSo 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,\u201d she explained.<\/p>\n

\u201cThere are also pediatric nephrologists who know about rare kidney disease, and I didn’t realize the difference.\u201d She explained that they had consultations with six pediatric nephrologists before they found the right fit.\u201d<\/p>\n

\u201cIs 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?\u201d she said.<\/p>\n

Treating a Child is a Group Effort<\/h2>\n

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 \u201cmust extend beyond the child to the family system\u201d, says Dr. Daryl O. Crenshaw,<\/a> MD, FACP, FASN, FASH, a board-certified nephrologist who practices in Thomasville, GA. These professionals are part of their care ecosystem.<\/p>\n