RESOURCES

/

FIND A SPECIALIST

/

CONTACT

Focal Segmental Glomerulosclerosis (FSGS)

Traejen K.

Children

Traejen was diagnosed at three years old with Focal Segmental Glomerulosclerosis (FSGS). He went through the routine of steroids, immunosuppressant drugs, and diet restrictions for the next six years. Despite all the treatments, he kept getting worse, and every time we didn’t think it could get worse, it would, this finding a new normal would become a pattern. Finally, at age nine, his kidney function dropped to the point where he needed a transplant, and so he received a kidney from his mother.

Unfortunately, FSGS returned and wiped out the new kidney in just weeks, forcing him into a new normal of PD. Despite many complications, he pushed through until PD would was no longer effective then forcing him to start home hemodialysis. Doing HD at home was the best option for Traejen so that he could continue with both school and his sports activities. Traejen quickly decided it would work best if he canulated himself and learned to do it independently.

Finally in February of 2023, Traejen was healthy enough to get the kidney transplant. It has now been over a year and Traejen is now living his dream of attending college and playing collegiate tennis.

There were many long hard painful dialysis sessions, and his health and stamina continued to get worse. He also started having seizures. The seizures were mostly around dialysis, and sometimes while on dialysis. Despite it all, Traejen remained determined to live life to the fullest, thus, becoming a state medalist in tennis and graduating with honors. In 2016, his nephrologist put connected him with Dr. Grimm at the Stanford Children’s Hospital, in order to see if another transplant would be possible. At that time the opinion was that another transplant would just have the same result, and that Traejen should wait. However, in 2019, Dr. Grimm contacted Traejen about pioneering a new transplant process that involved getting a stem cell transplant first, which would improve his health, and then undergo the kidney transplant. There would be risks, including a small chance of serious GvHD (which could result in death).

Traejen decided to move forward and take the risk, even though he was convinced he would be in the small percentage to get GvHD. Unfortunately, He was right and after going through chemo and radiation and getting the stem cell transplant, in February of 2022, he contracted stage 4 GvHD and spent the next year fighting for his life. Finally in February of 2023, Traejen was healthy enough to get the kidney transplant. It has now been over a year and Traejen is now living his dream of attending college and playing collegiate tennis. Because of his stem cells and kidney both coming from his father, he is off of all kidney and transplant-related medications.

Share Your Story

Your story matters. Share your journey with rare kidney disease and inspire others on their path towards hope and resilience.

Patient Navigation

Explore real stories written by people with different types of RKD share their experiences. Hear
perspectives from adults and kids, and learn from those who understand the challenges you
face.

Related Resources

News

NephCure Wins Bronze Anthem Award for APOL1 Kidney Disease Awareness Campaign 

News

PARASOL Project Advances Understanding of Proteinuria in FSGS

Video

MCD vs. FSGS: Breakdown of Diagnostics and Clinical Course

News

NephCure Champion Spotlight: Nicholas Ariyo

ALL RESOURCES

Sign up to get NephCure’s latest updates.

SIGN UP
This field is for validation purposes and should be left unchanged.