It has been Nichole Jefferson‘s personal mission to tell her story and promote awareness. She was diagnosed with end-stage renal disease (ESRD) in October 2003. At that time, not only was she unaware of what that meant; she also did not know she was a high-risk factor for developing the disease.
After the initial shock of the diagnosis, she decided peritoneal dialysis (PD) was the best option and utilized PD for a few years until she needed to switch to hemodialysis.
She received a kidney transplant from a deceased donor on June 12, 2008, but at the time, she didn’t realize it was simply another form of treatment and not a cure. Today, Nichole is waiting for a new transplant.
Nichole has worked with many advocacy groups on Capitol Hill and has provided her personal experience with ESRD to leaders in the field of nephrology. She tries to express the feelings of those who are unable or unwilling to speak for themselves.
October 3, 2022: Nichole Jefferson named as next Patient Voting Member of the Kidney Precision Medicine Project (KPMP) Steering Committee
"As a member of the KPMP Community Engagement Committee for the last 5 years, Nichole has provided valuable and actionable input that has driven protocol changes, survey enhancements, and better KPMP participant engagement. Her leadership and values led her to be chosen as a member of the KPMP Steering Committee. The Steering Committee is the primary governing body of the consortium, with voting positions held by site principal investigators, and patient and NIDDK representatives."
Buzzfeed article by Taler B Gutierrez B.S, M.S.H.S "Bleach Can't Cure This - Nichole's Kidney Disease Story"
Kidney Research Institute: Patient and Community Advocate, Research Participant
Kidney Health Initiative: Patient and Family Partnership Council
The American Kidney Fund: Ambassador
Responsum Health: Expert Advisory Council
American Society of Nephrology: "Kidney X Providing Patients Hope"
Articles and Interviews:
Clinical Journal of the American Society of Nephrology: "A Patient’s View on Exercise and ESKD"
NKF Staying Healthy: "No Warning: A Hepatitis C Scare"
National Library of Medicine: "Patient perspectives and involvement in precision medicine research"
InnovationDistrict: Apollo Community Advisory Council
Cision Newswire: "Report of NKF Consensus Conference to Decrease Kidney Discards"