Your Stories

Patient Stories from Around the World

November 14, 2019

My name is Annette. I have been asked to share my world a bit and perhaps give a little insight. Give an example of how to grow with all the hurt and move despite it all.  I volunteer as a victim’s ad...

November 14, 2019

So I guess I’ll start at the beginning, I am a twin (and proud of it!), but it meant I was born early; 3 months to be exact. That came with its own set of complications. I was born with a brain bleed,...

October 9, 2019

“No Mud, No Lotus” -Thich Nhat Hanh

I am still in disbelief as I look back over the last 11 or so years. I didn’t think I’d survive. Only very recently have I grown strong enough to embark on the delib...

August 21, 2019

So there I was, happily sitting in a church pew with my Bible on my left side and my journal on my right. As the pastor kept on sharing parts of his sermon, I was listening so I get the most out of th...

August 9, 2019

Four years ago, Emily Cashel discovered a brain tumor that changed the course of her life and career. This experience inspired her to start HealthWale, a #PatientEmpowerment company, specially designe...

July 17, 2019

One thing they don’t tell you about rare conditions is that the testing can be grueling. The doctor just wants to make sure they know what you have, so you feel confident that you know what you have....

April 8, 2019

Our photography series, Illness & Identity by Amanda Crommett, continues on as we take an intimate look inside the life of Mike Rosen, exploring the ways that illness experiences are influenced a...

February 28, 2019

To the Doctor who ignored my Rare Disease because he thought I was drunk,


I don't blame you. I get it. A girl in her mid 20's comes in disoriented with slurred speech and shielding her eyes from the l...

February 20, 2019

An excerpt from Chapter 13 of How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers, Second Edition (2018) by Toni Bernhard


Chapter 13: The Present Moment as a Refuge


...

January 18, 2019

Late in the night on Sunday, January 8th, 2017, I was lying in darkness at my brother’s house near the Long Island Sound in Connecticut, unable to sleep. In the near silence, a neighbor’s boots crunch...

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