Lightning Flowers with Katherine Standefer

Stan and Clarence chat with Katherine Standefer about her memoir Lightning Flowers. Standefer recounts her experience managing a rare diagnosis amidst a burdensome healthcare system. This includes exploring biomedical device supply chains and their impacts.

More about Katherine and her memoir can be found at http://www.katherinestandefer.com/

Check out our new website at healthchatterpodcast.com

Brought to you in support by Hue-MAN who is Creating Healthy Communities through Innovative Partnerships. More about their work can found at http://huemanpartnership.org/

Discussion Topics

How are you now? Can you give us an update on your life? How is her day to day life affected by Qt syndrome? How much modification to her daily life has been necessary? Does she feel like what she has gone through in her life to this point is "worth it?'
Seeing the difference between the impacts a patient experiences from the actual condition, versus the impacts they experience because of the healthcare system

Has she continued to find her insurance barrier impenetrable? We all feel, and continue to feel that this such an unnecessary part of living with such a difficult disease. Are there ways for her or her family to arrange benefit functions to help her. It's all for a good cause.

Equity in our healthcare system; “a system that relies on individuals making exceptions or bending over backwards for you isn’t actually a system that is functioning”
Resistance to death and how it shapes the use of medical resources and technologies that may not be necessary.