Patients Have Power!

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! 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. 

Wherein Lilly and Aaron chat about the exciting new therapies going into trials that focus on methods beyond drugs, such as stem cell and fecal transplants, and diet and lifestyle changes. Also: How stem cells are like Minions, the struggles of finding the right condiments in the grocery store, and a fierce debate about Aaron's vegetarianism.      

Adi speaks to Lilly about taking a year off to fight a brain tumor with a clinical trial, multiple specialists, and a surgery on his brain...while he was still awake!

Erika - a friend who found us through Instagram - became the first guest to come through the brand new Clara offices for a podcast! Erika is the embodiment of patient power. She sits down with Lilly to talk through her self-diagnosis journey and how she learned to own her health.    

Lilly and Aaron share another glass (or two [definitely two]) bottles of wine as they talk about the common questions that patients tend to ask about clinical trials. Everything from "I don't want to be a guinea pig" to the surprising number of trials studying orgasms are discussed.  Also in the episode:  Aaron gets fired about about pharma lobbying; The Backstreet Boys released a new song?;  PatientsForAffordableDrugs.org;  Subscribe to our Youtube channel!; And submit to our $10,000 writing contest.  

Aaron and Lilly catch up over a glass (or two) of wine to talk about her keynote speech at the Interdisciplinary Autoimmune Summit, where Lilly used her platform to talk about administrative burdens placed on patients. And we're now a video podcast! You can watch us at our Youtube channel here: https://bit.ly/2FJyqzX