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Focal Segmental Glomerulosclerosis (FSGS)

Tiffany L.

Adults

Tiffany Lymon was diagnosed in August of 2020. Prior to her diagnosis, she noticed symptoms such as rapid weight gain, leg swelling, cramping, and unrelenting fatigue. Because these symptoms occurred while the country was still experiencing lockdown measures to prevent COVID-19 spread, many of the appointments were tele-health and her primary doctor’s initial thought was that the symptoms were related to lack of activity and increased eating due to being home. However, the sudden onset of the symptoms were indicators that there was something else going occurring. Not only that, but Tiffany was an exercise instructor and had continued to stay active despite being on lockdown.

After being tested for Lupus, Lyme Disease, MS, Multiple Myeloma and a host of other diseases, it was the 24 hour protein results that hinted to a kidney disease. Spilling over 4G of protein was enough to alarm her PCP to contact a nephrologist. The Nephrologist’s call came at 8am on a Sunday after reviewing Tiffany’s labs. That urgency told Tiffany that this was indeed serious. Over the next 2 weeks, almost daily, the Nephrologist sent her for different tests and scans, including a biopsy and the official diagnosis came at the first actual appointment with the nephrologist.

By May 2022, she was at a remission level protein spill and down to only the Tacrolimus – all other levels that were impacted by the steroids (sugar, heart rate, blood pressure) had returned to a more typical state. Tiffany then started the process of regaining her strength and endurance to be able to resume exercise.

Treatment consisted of a high dose of prednisone – 60mg/day – which created additional issues such as – steroid-induced diabetes, rapid heart rate, lower immune system – so the medications at one point were over 20 pills a day – most to combat the side-effects of the steroids. In addition to these additional conditions, the steroids led to more weight gain (in total she gained 50lbs), joint aches and pains, and inconsistent energy levels. While her kidney function was stable, and the Nephrotic Syndrome was improving her overall mental well-being was being put to the test. In late 2021, her Nephrotic Syndrome improved to near remission and her doctor started the long process of weaning her off steroids. By May 2022, she was at a remission level protein spill and down to only the Tacrolimus – all other levels that were impacted by the steroids (sugar, heart rate, blood pressure) had returned to a more typical state. Tiffany then started the process of regaining her strength and endurance to be able to resume exercise.

Now in 2023, she has lost close to 25 pounds of the weight she gained and while she is still not back at her original strength or energy levels, she feels much better in her ability to manage day- to-day life. In early February, her protein levels increased slightly so she is aware that this condition is a constant battle. She plans to explore changes in her diet to see how that impacts her ability to remain in remission. For now, Tiffany commits to monthly labs, exercises when she can and works to support others that are living with the same diagnosis, as she knows it can be a scary and sometimes lonely journey.

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Related Resources

Video

MCD vs. FSGS: Breakdown of Diagnostics and Clinical Course

Fact Sheet

Focal-Segmental-Glomerulosclerosis (FSGS)

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