RESOURCES

/

FIND A SPECIALIST

/

CONTACT

Focal Segmental Glomerulosclerosis (FSGS)

Teleya B.

Adults

I have APOL 1-Associated FSGS. I was diagnosed when I was 14. For 20 years, I’d been stable only escalating to Stage 3b in my 30’s. Unfortunately, Covid destroyed what was left of my kidney function and for the last 2 years, I’ve been dealing with Kidney failure and both peritoneal dialysis/hemodialysis. I was blessed to receive a donor through the kidney-paired exchange program. The transplant, however, was unsuccessful and the donated kidney was removed 5 days after surgery. Living my life with a chronic illness, I’ve always been overly aware of time. How undervalued it is by many and how much of a blessing it is to have good health. I made the most of my time by travelling to over 80 countries in my 20’s. I’ve met so many amazing people, learned many languages and cultures and learned about different kidney-related treatments in different countries. I love to share what I’ve learned with others. 

I first learned about NephCure in 2004 when I searched “FSGS” online. It was new and I was so happy to see a community where people with my disease shared their stories. Initially, I was afraid to share my story as a teen because I thought my kidney disease was somehow my fault. It wasn’t until I was much older through a kidney gene panel that I discovered my FSGS was connected to a APOL 1 variant that ran through both sides of my family. After my failed transplant this summer, I really wanted support and to speak with other people with my rare disease.        

 I went to a NephCure ‘Rare Kidney Connect’ in Chicago and was so happy to talk to people who were familiar with my journey and even my old pediatric nephrologist was in attendance!

Nephcure and their amazing Team including Brittney, Kimberly and Montrez have been very helpful in providing info for other transplant centers and the American Kidney Fund.  I went to a NephCure ‘Rare Kidney Connect’ in Chicago and was so happy to talk to people who were familiar with my journey and even my old pediatric nephrologist was in attendance! The Summit in DC also introduced me to other amazing CKD Warriors who have been so supportive and informative as I’ve gone through a difficult year.  I couldn’t believe how many medical professionals and kidney disease patients were in one room educating each other in a diverse environment. It was wonderful. 

I’ve always felt very isolated throughout my journey with CKD, The Rare Kidney Connect helped me discover that I don’t have to be. I’ve always felt like an expert when it came to anything concerning FSGS, but having Covid-Associated Nephropathy and sudden kidney failure was something I wasn’t ready for. The friends I met and the NephCure team have been very encouraging. 

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

Video

MCD vs. FSGS: Breakdown of Diagnostics and Clinical Course

Fact Sheet

Focal-Segmental-Glomerulosclerosis (FSGS)

ALL RESOURCES

Sign up to get NephCure’s latest updates.

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