Trial By Fire

Lilly sits down with Anna Evangeline - aka Six Hips (sixhipsandcounting.com) - for a frank and open chat about advocacy and her own health journey. Anna details her multiple surgeries, the long hospital stays and fighting for the care that she needs, the anger that she still feels about the things that have happened, and how honesty and raw storytelling helps spread stories more effectively. 

In this episode, I had the absolute pleasure of sitting down with Michele Rhee, Enzyvant’s Head of Patient Affairs. A simple job title doesn’t quite do her story justice: Michele’s road to patient advocacy involves a cancer diagnosis, a collapsed lung, a heart tumor, tears shared with her mother, and a fight to get the treatments that she knew she needed. And now, she uses all the experience she gained through her life as a patient and an advocate at Enzyvant. Michele and the Enzyvant team work to find a treatment for Farber disease, a rare disease that has about 80 reported cases world-wide [1], through patient engagement and education.

We chat about how much she loves her work, how lucky she feels, and the power of a story to change the world. Michele is one of my role models in patient advocacy and I think you’ll see why as you listen to our chat!

1. Zielonka, M et al. Genetics in Med. 2017; a cross-sectional quantitative analysis of the natural history of Farber disease

When we were planning out the Patients Have Power! podcast, there was one name kept popping up as the perfect first guest to have visit Clara Studios.

So you can imagine that we were absolutely thrilled that Amanda found time in her busy schedule to visit us for a glass of wine and some honest, raw, hilarious, inspiring talk. 

Kelby joins Lilly to chat about her diagnosis and health journeys, and how living with a chronic condition is just like having a horrible roommate. 

Lilly heads to Vegas to attend the first-ever Crohn's and Colitis Congress. Along the way, she interviewed the ever-inspirational Brooke Abbott (crazycreolemommy.com) about advocacy, mothering, and a busy life with a chronic condition.  

@WheezyNurse - aka Amber - sits with Lilly to discuss the importance of patient-centricity and compassion in the world of healthcare, and especially in nursing. 

Another interview from Lilly's trip out to the lights, glitz, and glamor of Las Vegas. Aaron Blocker chats with Lilly about his health journey and how that led to a life in advocacy. 

Rebecca Black opens up about her journey through misdiagnoses, parking lot cry sessions, and learning to grow empowered in her advocacy. 

Aaron Jun - Head of Marketing at Clara Health - joins the pod for the first time to chat with Lilly about the incredible financial demands placed on patients. 

Ali Feller - also known as Ali On The Run - joins Lilly to chat about her marathoning and her own amazing podcast, the ways in which her Crohn's and colitis have impacted her life, and how her diagnosis at the age of seven ruined a family vacation.