PATIENT STORIES
Julianne
When I was an 11 year old fifth grader, I started to notice my body gaining weight and my face becoming swollen. My pediatrician ordered a urine test, it came back positive with protein in my urine and he immediately started me on oral prednisone. He referred me to a pediatric nephrologist that performed a biopsy and determined I had FSGS.
Everything happened so fast and suddenly my life was changing right before my eyes. I was stuck at home for the first few months of 6th grade, going in and out of the hospital while receiving triweekly Solumedrol pulses to combat this new idiopathic disease. Years went by as my nephrologist tried different treatment options from more prednisone to Cytoxan, but nothing seemed to place me in remission. Four years later I was placed on peritoneal dialysis until I received a kidney transplant from my father the summer before my senior year of high school. Within a few weeks, a biopsy had shown that the FSGS was present in my newly transplanted kidney. I was back at square one once again as I started receiving Solumedrol pulses and tried a newer medication called Rituximab.
Meanwhile, I was hectically applying to colleges and juggling my missed classes due to my plasmapheresis treatments I had recently started. Initially choosing the college I wanted to attend was difficult as I was accepted to the majority of the schools I applied to, but when factoring in my triweekly plasmapheresis treatments, it was an obvious, easy decision that my best choice was UCLA. I fell in love with the campus and knew it was a perfect fit with a balance of social activities, robust academics, and most importantly, a medical facility capable of handling my plasmapheresis treatments. As my kidneys continued to decline, I eventually took a quarter off from college to restart dialysis, only this time I switched to home hemodialysis. I found home hemodialysis gives me power to control my life instead of dialysis controlling me, allowing me to pursue and earn my Bachelors in Biology with a minor in Asian American studies while at UCLA as well as recently earning my Doctorate in Pharmacy in May 2018. Someday, I aspire to work as a nephrology or transplant pharmacist and be able to help other patients that are in similar situations as me. I hope there will be a cure for FSGS where transplant is not a last resort, but until then, I stay on dialysis awaiting a transplant.
Christian
Christian, a 2018 graduate of Bellarmine College Preparatory, has been battling Nephrotic Syndrome (NS) for the last 16 years. NS is an unforgiving and sneaky autoimmune disease that attacks the kidneys and stops them from working. Since the young age of two Christian has had hundreds of relapses and been on countless immunosuppressants and chemotherapy drugs to keep his kidneys working. All treatments are harsh and have severe side effects. Unfortunately, Christian began to relapse in the beginning of July after ten months in remission. Yet another disappointing set back to his health.
In the fall Christian will attend the University of Kentucky. This will be a new chapter as Christian will have to manage his health on his own far away from home. However, Christian is determined to be like any other college freshman and not let NS get in the way of his studying and having fun.
Currently there is no known cause and no cure for NS. NephCure is the only organization that is committed to funding research to find the cause and cure of NS. That is why our friends and family have been actively organizing events to spread awareness and raise funds to find a cure for Christian and all others who suffer from chronic kidney disease.
Elena
When she was 2.5 years old, Elena was diagnosed with Nephrotic Syndrome due to Minimal Change Disease. A later biopsy revealed that she has Focal Segmental Glomerulosclerosis (FSGS).
Over the years, Elena has had several relapses and complications requiring her to try different treatments. She continues to take immunosuppressants twice a day and has also needed a Rituximab infusion.
Elena is now in middle school and enjoys playing competitive soccer. While she is currently in remission, our family continues to support NephCure Kidney International in the hopes of finding a permanent cure.
Jason
When Jason was three years old our world was turned upside-down. It started with a swollen tummy just as were going on a trip to Lake Tahoe. We thought it was allergies as his face became puffy. After tests the doctor confirmed that he had a chronic condition called Nephrotic Syndrome and there was no cure. The doctors don’t know what causes Nephrotic Syndrome and in our case there is no family history of any kidney diseases.
It has been an uphill and painful battle for him and the rest of the family. He has been on Prednisone since he was 3 years old and has also been prescribed Cytoxan, Cyclosporine, Prograf and other drugs. The drugs are a double edged sword; although they help keep him in remission, they cause immense problems to his body such as leaching calcium from his bones. He has also undergone numerous hospital stays (due to relapses), steroid and Rituximab infusions and hundreds of blood tests.
Jason is now 21 and almost finished his degree in Biology in UCSB. He has grown into an adjusted, contented adult and wants to get a PhD in pharmaceutical research. Maybe one day he’ll find a cure for Nephrotic Syndrome and FSGS!
Mark
Mark has had Nephrotic Syndrome since he was 3. He has had to take large quantities of medicines, some with nasty side effects, and has occasionally been hospitalized.
Mark is pretty fortunate compared to many of the other patients afflicted with the disease as his kidneys are still functioning at 100%, and he lives a healthy and well rounded life. Nevertheless, Mark is a big supporter of Nephcure and their search for a cure.
Titus
Titus was diagnosed with Minimal Change Nephrotic Syndrome (MCNS) at the age of 2. After 2 years of frequent relapses, his doctor put him on Cellcept in hopes of gaining a longer remission. He stayed on Cellcept for 3 years with zero relapses and now is medicine free for the first time in 6 years! Titus has stayed active and he has never let Nephrotic Syndrome decide for him what is possible. Titus participates in swim team, flag football, basketball and triathlons. He is always the life of the party with his easy going and silly personality. We know that God is in control and we have faith that he will walk with Titus through the ups and downs of MCNS. While Titus is in remission today, we know that with this disease, you never know what tomorrow holds, so we continue to support Nephcure’s commitment to finding a cure.
Kristen
Kristen was diagnosed with Nephrotic Syndrome, and later FSGS at the age of 5. She has been on prednisone, cyclosporine, myfortic, and countless other medications, experiencing extreme side effects and dozens of relapses in between. After a rituximab infusion in 2012 she has been in remission and currently on a taper off of her current medication. After nearly 20 years as a kidney patient Kristen has never let her disease define her. She has struggled, but she has overcome challenges, attended college, and keeps on smiling.
Jordan
Jordan is a superhero kid with a big heart. He was diagnosed with Nephrotic Syndrome in 2012 at four years old. Jordan has a loving and kind spirit, and we often describe him as having an “old soul”. Currently, Jordan’s NS is treated with Prednisone and Prograf and unfortunately he still often relapses. He also faces severe short and long term side effects (weight gain, significant mood swings, brittle bones, moon face, and cataracts to name a few). He’s a resilient little guy, with determination and tenacity to fight any obstacle that confronts him. Jordan will not let hospital stays or days home sick from school keep him from being unfocused on his academics. He’s a straight “A” student who continues to challenge himself to learn more.
In an effort to help keep his kidneys functioning properly, and to prevent any permanent damage, along with the meds, his diet also had to significantly change. At the age of 5 Jordan took charge and closely started paying attention to the food packaging labels. While shopping at his favorite market (Trader Joe’s) he’ll often say, “mommy, I can’t have that, that has too much sodium in it”. Jordan understands that he’s different from other children and is limited in some circumstances, but he embraces it in a way that actually inspires and empowers our family.
We have made Jordan’s Journey an integral part of our lives and our mission is to create awareness, fundraise in efforts to help fund research for better treatment and ultimately find a cure.
