Patient Stories

Christian

img_5633-e1516989776260.jpgChristian, a senior at Bellarmine College Preparatory, has been battling Nephrotic Syndrome(NS) for the last 15 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.

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

Elena1When 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.

Jason-1

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

neph_1465625908065-e1517590567848.jpgMark 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

Crazy T

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

IMG_1090Kristen 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.