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Focal Segmental Glomerulosclerosis (FSGS)

Amber H.

Adults

When I was eleven years old, I had ongoing swelling that no one could figure out the cause of. Every time we made an appointment to see my pediatrician, the swelling would magically resolve by the date and time scheduled. The swelling in my eyes was first thought to be that I was not getting enough sleep, and the swelling in my abdomen was thought to be too much candy and not enough exercise. It wasn’t until one day in the beginning of December 2009 when I came home from school, my legs were so swollen that they were shiny and hard as a rock. My mom rushed me to my doctor’s office – without an appointment – so my doctor could come out and lay her eyes on me and we would plan to schedule an appointment later in the week. However, when my doctor saw me, she knew something was far worse than just a little weight gain. After giving a urine sample, I was sent immediately to DMC Children’s Hospital Emergency, not aware that my quick visit to see the doctor would end up with a hospital stay. I was very nephrotic and the hospital put me on IV Lasix and prednisone. I lost ten pounds of water weight that weekend in the hospital, followed by another six pounds at home. I started at 106 pounds and was down to 90 pounds in two weeks. That’s 15% of my little body in complete water weight! Later on, I was told that all that extra fluid in my body was putting a whole lot of stress on the rest of my organs.

In January of 2010, about six weeks after my hospital stay, I had a kidney biopsy that confirmed a diagnosis of FSGS with 25% scarring, starting me on an aggressive two years of Cyclosporine. I was already on a high dose of prednisone, which unfortunately seemed to not be working, or not working fast enough. It was thought that I was steroid resistant. After taking Cyclosporine and increasing the dose each week, while at the same time weaning down on the prednisone for months, it was such a relief to finally have found a treatment that worked. I stayed on Cyclosporine for about two years and stayed in remission for several months after stopping Cyclosporine. Then came my first relapse, and multiple relapses would follow. Every time I got sick, I knew I would be seeing protein in my morning dipstick. Each relapse scored me another high dose of steroids treatment. The worst part was having to wean off such a high dose of steroids for months long, even though I would kick into remission after about a week each time. After being diagnosed, I was told I had to be on a low sodium diet. At the time, I thought this was the worst thing ever. However, looking back, I realize it was even more difficult for my mom who would spend hours at the grocery store looking at food labels trying to figure out what she could feed me each day. My new diet wasn’t the only difficult thing. At school I got bullied – for being the weird kid who wiped down her desk with antibacterial wipes because I didn’t have a functioning immune system, and for the ungodly side effects that prednisone and Cyclosporine caused me.

My mom and I started getting involved with NephCure in 2020. We love NephCure and all they are doing for kidney disease research and patients like me.

But I got out of class every day at the same time to take my pills, and I got a doctor’s note for unlimited bathroom passes, so that was cool. Using dipsticks every morning and taking my blood pressure while eating breakfast made sleepovers a little weird. And when my immune system was down, my mom made me and my friends wear masks if they came over to protect me from catching a bug. What I’m trying to get at is in no way were my preteen and teenage years considered normal. Instead of worrying about boys, I had to worry about catching a cold and the color of my dipstick, and how much sodium was in food and how puffy my cheeks looked. In 2015, I relapsed right before my junior prom. This was one of the worst things that I thought could happen to me considering I knew the side effects of prednisone would lead me to a body full of acne and a round face. However, I was compensated for my troublesome prom experience by that being the last time (fingers crossed) that I would relapse ever again. I am now 25 years old and have been in medication-free remission since I was 17 years old.

My doctors are unsure what allowed me to stay in remission, but I am so grateful that I am. I’ll follow this by saying that I am a firm believer that everything happens for a reason. I would not be where I am in my life now if it were not for being diagnosed with FSGS kidney disease. I would not be a nurse and I would not be aspiring to get my doctorate of nursing degree in nurse anesthesia. My mom and I started getting involved with NephCure in 2020. We love NephCure and all they are doing for kidney disease research and patients like me. In April of 2022, I was asked to speak at the NephCure patient summit in Orlando, Florida and share a part of my story. I’ve also had the opportunity to go to a few of the Tampa Pig Jigs in the past couple of years, meeting Will Wellman and his friends, giving me inspiration to want to do more. So!!!….in October 2023 I organized and hosted my own fundraiser for NephCure. My goal was to raise $2,000 but I ended up raising well over that goal ending at $3,300! I am proud of the results, especially with it being my first fundraiser EVER. About 20 years ago, NephCure started from a few concerned parents that had to do something and look where it is now. We patients need to support NephCure and make the world aware that we are here, because even a little goes a long way.

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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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