 | NephCureApr 28, 2025 |  |
Meet Stacey, who at the age of 5, was diagnosed with childhood nephrotic syndrome that was later diagnosed as minimal change disease in 2019.
Stacey moved shortly after her initial diagnosis as a child, and following her first or second relapse, the pediatrician referred her to a pediatric nephrologist. After extensive testing, the specialist allowed the local pediatrician to manage her relapses. In 1979, Stacey's family relocated to Texas, where their family doctor promptly referred her to Children's Medical Center in Dallas for additional testing. She continued receiving steroid treatments for her relapses. Eventually, these episodes became less frequent, occurring approximately twice a year, and ceased entirely around age 13. From ages 5 through 12, Stacey's treatment consisted exclusively of steroids.
In 1990, Stacey experienced what doctors believed was a relapse. Her mother took her to a nephrologist who performed a renal biopsy, though they don't recall the results or recommendations, and her records have since been destroyed.
Between ages 20 and 48, Stacey remained relapse-free. In 2018, she began noticing pitting edema on her shins at day's end, attributing it to normal aging, though it worsened after long flights and never fully disappeared.
Around Labor Day 2018, she developed severe pain in her side and shoulder, especially when breathing deeply. After enduring it for days with sleepless nights, she visited an urgent care clinic. X-rays and an electrocardiogram indicated possible mild pneumonia or rib injury. She received antibiotics and a Medrol pack.
Concerned about a potential kidney connection due to her mother's history of childhood nephrotic syndrome, FSGS, dialysis, and kidney transplant, Stacey consulted her doctor. Though the doctor attributed the water retention to steroids, blood tests were ordered to check kidney function before prescribing a diuretic.
Stacey continued experiencing pain and sleeplessness. After another doctor visit and x-ray, she received a second antibiotic for suspected pneumonia. The pain while reclining persisted for months, and the water retention never fully resolved. She struggled to resume running due to swollen legs but persisted to try eliminating excess fluid.
Concerned about the persistent edema, Stacey experimented with various diets—no salt, fasting, high protein/low carb—but saw no improvement. During online research, she discovered Adult Nephrotic Syndrome and Minimal Change Disease, conditions she hadn't previously connected to her symptoms.
At her next checkup, Stacey requested tests for blood protein levels and urinary protein. When initially told her bloodwork looked good except for needing more protein, she inquired about her urinalysis. After a delayed response confirming protein in her urine, she was asked to provide another sample but instead sought a specialist.
Fortunately, she quickly secured an appointment with a nephrologist who confirmed her suspicions. A February 2019 biopsy revealed Minimal Change Disease (MCD), beginning her journey of relapses and medication adjustments. Though challenging, Stacey considers herself fortunate—she's avoided hospitalization, generally responds to treatment, maintains an active lifestyle, and found support through NephCure and Facebook kidney disease groups.
To read more stories like Stacey's, visit NephCure.org!
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