For Families

Become Your Own Advocate: Learning to Partner with Your Healthcare Professionals


This episode is hosted by nurse practitioner, Elaine Kulm, who supports patients with primary immunodeficiencies, such as APDS. Elaine interviews a patient diagnosed with APDS, Kristin. Kristin describes her courageous, challenging, and inspiring journey of working with her medical team to reach a diagnosis. She also details the importance of becoming your own advocate and how to navigate the US insurance and healthcare systems.​
Epic is mentioned briefly throughout the podcast. Epic is a software system that is commonly used in hospitals or medical centers to manage electronic medical records. ​

This educational podcast is sponsored by Pharming. The information contained within this podcast is for educational purposes only and is not intended to be medical advice. The speakers have been compensated for the presentation of this information. This activity cannot be used for Continuing Medical Education credits. Patient experiences are discussed in this episode. It is important to recognize that these experiences may not be representative as every patient has a unique disease course. Healthcare professionals should exercise their own judgment when managing patients. ​


00:00 Kristin’s Diagnostic Journey​
11:18 Collaboration Among Physicians and Creating a Team​
20:45 Navigating the Disease Journey​
41:39 Kristin’s Insights on her Everyday Life

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