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Be Your Own Kidney Advocate

Be Your Own Kidney Advocate

Alex Berrios, Jr. & Whitney Simmons, BSN, RN

BIO

Greetings My name is Alex Berrios. I serve a patient services advocate with the University of Kentucky. I am a 13-year kidney transplant recipient and my goal is to help patients at all stages of their kidney disease understand the process of getting a Kidney transplant. I am interested in understanding where the patient is in their thinking about receiving a transplant. I am here to talk with patients, caregivers, and their medical team to discuss all options from direct transplantation to possibly looking at the paired exchange program. I also encourage patients to consider the living donor program as well

I have been involved in different avenues in the Kidney space from grassroots lobbying to help bring to the forefront some issues about individuals with Kidney disease, from Immunosuppressive coverage for the life of the kidney transplant to protecting Living donors from any type of discrimination.

I am here to help answer any questions, myths or concerns about the prospects of getting a kidney transplant. My areas of strength are trying to ensure the patients I talk with have the best possible experience they can have through advocating and open communication about the transplant process.

I look forward to working with you and helping you along this journey.

BIO

Whitney is 31 and lives in Edmond, Oklahoma with her husband Adam, 3-year-old son Ethan, and baby #2 who will make his debut on August 11th. Whitney works as a Registered Nurse and is a current Graduate student. She will complete her Nurse Practitioner in December 2020 with a focus in Adult Gerontological Primary Care. Whitney has worked in a variety of patient populations including heart, liver and kidney transplant, as well as extensive cardiovascular care patients in the Intensive care setting. Whitney has been an IgAN patient since 2012, thankfully she has remained stable since 2015 through the use of daily immunosuppressants, ACE inhibitors, and close monitoring by her amazing Nephrologist. She is also a committee member for IgAN SPARK Leadership Team since conception in 2019. Being a patient and a caregiver of kidney disease prompts her to advocate for both sides of the spectrum, having knowledge is power as a healthcare provider but is even more powerful as a patient.

SESSION DESCRIPTION

Whitney: The role of patient advocacy in the healthcare realm relies heavily on empowering patients to become part of the healthcare team, giving them the tools to make informed decisions with their physician regarding treatment. This portion of the seminar will show patients and caregivers how important their individual and collaborative role is in the management of IgA Nephropathy.

Alex: Patient Advocacy is a term in health care that can mean a variety of things, from volunteering time with different organizations to working in the field as a patient advocate. In this portion of the webinar I will discuss the different ways to get involved in advocacy from volunteering, building a network of other patients and healthcare professionals to help better understand IgAN.