This NKF Live crossover episode features a discussion on shared decision making on medical treatment options for people with atypical hemolytic uremic syndrome (aHUS). Our faculty includes a patient expert and advocate -- the actor and Substack author, Taylor Coffman, as well as two nephrologists, Holly Koncicki, MD and Ramy Hanna, MD, an expert on aHUS. They’ll cover a range of topics, with a focus on how to work with your medical team to achieve the best outcomes in aHUS. This discussion provides valuable tips and information not only for people with aHUS, but for all others who wish to gain insight into how to work with the most effectively with their medical team.

In today's episode we heard from:

Taylor Coffman is an actor, writer, podcast-maker, and mother with pregnancy-triggered aHUS. As a performer, she can be seen in Silicon Valley, Feud: Bette and Joan, and Life In Pieces, among others. Following her remission, Taylor also started work as a patient advocate helping those with life-changing diagnoses. She’s a patient expert and the author of Rare Disease Girl substack, sharing her journey and life-navigation tools weekly

Dr. Ramy Hanna ia an Associate Professor of Medicine and Nephrology at the University of California Irvine. He’s a clinician-educator who’s devoted to patient education and research on kidney diseases like aHUS. Dr. Hanna is focused on working with underserved communities, as well as improving the diagnostic process and treatment outcomes for patients.

Dr. Holly Koncicki graduated from the Rutgers New Jersey Medical School and completed her Internal Medicine Residency and Fellowship training at the Icahn School of Medicine at Mount Sinai. She is triple board certified in Internal Medicine, Nephrology and Palliative Medicine and Hospice. She is one of a few physicians who has trained in an integrated program of Nephrology and Palliative Medicine and is part of a small group of experts in this field. Though she cares for patients with all types of kidney problems, her specialty is caring for older patients with kidney impairment. She is widely published and has spoken nationally on topics including decision making in advanced kidney disease and symptom management. Her research focuses on communication tools to improve communication between patients and providers around discussion of treatment options for kidney disease. In 2020, she was honored by receiving the Cullman Family Physician Communication Award.  She prides herself in learning each patient’s narrative that she treats, so she can best understand how to care for them.

Additional Resources:

Learn More About aHUS

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