Patient Commando’s “Share Your Story” program gives patients, caregivers, and healthcare professionals a world class catalogue of personal stories providing insight to the lived illness experience.
Our website is a platform for the voice of the patient as told in their own words. Using the medium of their choice, patients and those who speak for them can post their own story whether in prose, poetry, video, song or photo.
Every patient has a story. The very act of telling our story makes us feel good. When the story comes from an honest place and is well told, it has the power to change lives.
Share your story and change the world.
- Recent Stories
- Featured Stories
- Featured Writers
-
Curiosity Saved the Cat
By Kristen Knott “A new year has begun.” I say to our two fat cats sprawled on the couch, close to me, protecting or seeking protection. I am never sure which. Why I did not want these cats, or any cats for that matter gives me pause. The holiday season a blur, and snow piling outside, the furnace pumps to keep the deep freeze at bay. My mind is busy, remembering darker times. I am not sure what I thought would happen when I got to this moment. Images of pink balloons and roses, and savory smells, the pop of Read More…
-
Bringing HS (Hidradenitis Suppurativa) Out Of The Dark | Jackson Gillies | TEDxSantaBarbara
Have you ever woken up one morning to discover an abscess that would grow to the size of a baseball in your armpit? I have. I have HS or Hidradenitis Suppurativa, and so does up to 4% of the population. That's 230 million people, and yet no one is talking about it. Well, I will. Jackson Gillies, an 18-year-old student at SBCC. His life took a significant turn when he won Santa Barbara’s Teen Star USA crown in 2016. He has performed at the Concert to End Gun Violence Across America with Kenny Loggins and opened for Jim Messina. Four Read More…
Tagged Under: autoimmune, hidradenitis, HS, suppurativa -
Saryn Caister – How Can I Help You?
Saryn's friends and family struggled to know how to help him when he got really sick. But relief can come from strange sources. Saryn hosts an amazing radio show and podcast that covers environmental issues. Find it at: http://greenmajority.ca Read More…
Tagged Under: colon cancer, Surgery
-
Curiosity Saved the Cat
By Kristen Knott “A new year has begun.” I say to our two fat cats sprawled on the couch, close to me, protecting or seeking protection. I am never sure which. Why I did not want these cats, or any cats for that matter gives me pause. The holiday season a blur, and snow piling outside, the furnace pumps to keep the deep freeze at bay. My mind is busy, remembering darker times. I am not sure what I thought would happen when I got to this moment. Images of pink balloons and roses, and savory smells, the pop of Read More…
-
Bringing HS (Hidradenitis Suppurativa) Out Of The Dark | Jackson Gillies | TEDxSantaBarbara
Have you ever woken up one morning to discover an abscess that would grow to the size of a baseball in your armpit? I have. I have HS or Hidradenitis Suppurativa, and so does up to 4% of the population. That's 230 million people, and yet no one is talking about it. Well, I will. Jackson Gillies, an 18-year-old student at SBCC. His life took a significant turn when he won Santa Barbara’s Teen Star USA crown in 2016. He has performed at the Concert to End Gun Violence Across America with Kenny Loggins and opened for Jim Messina. Four Read More…
Tagged Under: autoimmune, hidradenitis, HS, suppurativa -
No Rhyme or Reason
By Kristen Knott Written January 23, 2016 A surge of nausea crashes through my belly, seizing my organs, constricting my muscles, shortening my breath. I am stunned. Paralyzed. Unyielding, heart racing, my eyes struggle to make sense of the perfunctory words on my computer screen. She is dead. Breast Cancer. Gone. What happened? She was fine last I had heard. The remnants of the email blur into small print –boilerplate logistical details, funeral, donations and the family she left behind. Two kids, a husband…an entire life left unlived. I never met her. I didn’t know anything about her, other than Read More…
Tagged Under: breast cancer, Kristen Knott, survivorship -
The next revolution in health care? Empathy
Published on Sep 8, 2014 This talk was given at a local TEDx event, produced independently of the TED Conferences. Paul Rosen, MD, a pediatric rheumatologist, serves as the Clinical Director of Service and Operational Excellence at Nemours. He received a masters of public health degree from Harvard University and a masters of medical management degree from Carnegie Mellon University. He was named ‘One of the First 100 Innovators’ by the U.S Federal Government Agency for Healthcare Research and Quality. Dr. Rosen’s interests include patient-physician communication, family-centered care, and the patient experience. He teaches medical students about improving the patient Read More…
Tagged Under: choice, communication, empathy, patient experience, patient story, shared decision making, tedx -
Donald Trump calls it “wherever”. Meet history’s most maligned organ
“You could see there was blood coming out of her eyes, blood coming out of her wherever...” Donald Trump disparagingly refers to it as “wherever”. It’s the background of every ultrasound baby picture including those overshared by Michael Bublé on Instagram... It’s the place where we were all implanted and spent the first, most carefree nine months of our lives, but is there a more maligned, disrespected or mistreated organ than the uterus? The ancient Greeks who gave us democracy, tragedy and the Pythagorean theorem also came up with the wacky wandering womb. In Plato’s Timaeus, the uterus is described as a living creature that travels around the body, a uterine Randle McMurphy inciting Read More…
Tagged Under: cheekyUF, UF, uterine fibroids -
It Took Breast Cancer for Me to get Tattoos
By Kristen Knott Written May 23, 2015 She begins. I scrunch my eyes and hold my breath, fighting through the first couple of minutes, adjusting to the sensation of the needle piercing my skin. Gradually, I start to let my body relax. The pain is not as intense as I thought it would be. It helps that Kyla moves from my left boob to the right, instead of remaining in one spot, which keeps my mind distracted and spreads the discomfort. I flinch as she injects into a tender area right near my left scar. I close my eyes and Read More…
Tagged Under: breast cancer, cosmetic tattoo, Kristen Knott, mastectomy, nipples, tattoos -
Me, Myself, and My Depression
When I began putting together this narrative of my experiences, I had no idea where to start. I was feeling a little lost. Normally I’m very on top of things, I do my readings two weeks ahead of schedule and like to get assignments done a week before they’re due. But for some reason, I found myself procrastinating about working on this. I think it had something to do with the fact that finding words to form a coherent and cohesive discussion about my experiences with mental illness was extremely intimidating and scary. In the beginning This is me when Read More…
Tagged Under: Allie Brosh, anti-depressant, anxiety, depression, mental illness, stigma -
Toodaloo Motha…
Ken Jeong of "The Hangover" fame, shares this intimate perspective of his wife's cancer and its impact on him as caregiver. This is part of a series of films for the upcoming WETA and Ken Burns Cancer project. cancerfilms.org/story-wall/ Read More…
Tagged Under: breast cancer, cancer, ken burns, ken jeong, the hangover -
Patient Voice
Patient Voice was made possible by a grant from the Arnold P. Gold Foundation, created in collaboration with the Children's Brain Tumor Foundation. We worked with an amazing group of young people who created images which they narrated for a video to describe their own experiences – My Diagnosis, The World of Medicine (the good and the bad) and What Keeps Me Going. Most recently, with grants from both the Fred J. Epstein Foundation and the Arnold P. Gold Foundation, we are continuing our “Patient Voice” work, engaging people in sharing their experiences to educate those working in the world of Read More…
Tagged Under: art, brain tumor, cancer, pediatric, photography -
Sjogren’s Makes Life More Complicated
After 20 years with Rheumatoid Arthritis I developed Sjogrens Syndrome. It is another autoimmune disease most recognizably showing itself as very dry eyes and mouth. It would have been called Secondary Sjogren's in the past because it developed with another autoimmune disease, but the classification criteria has changed recently. Dryness is a problem The dryness affects all areas of the body but is far more noticeable and annoying in the eyes and mouth. I use pilocarpine (salagen) in pill form for my dry mouth. It is a prescription drug. Without it my voice starts to diminish and I cough and choke a Read More…
Tagged Under: dryness, restasis, Sjogrens
-
Health Through Movement: How Nia Changed My Life
By Jennifer Hicks After 34 years living in my body, I became an expert. That is, an expert in myself. And I discovered, after all that time, that I am not ordinary. I have Bipolar Disorder. But that’s not what makes me different. I am unique because of how I have learned to manage my Bipolar Disorder. Yes, I need medication and psychotherapy, but there’s more to my wellness plan. I use Nia – a fitness practice which not only offers me physical fitness, but also a lifestyle, and now a profession. Looking at me, you’d never know I have Read More…
Tagged Under: bipolar disorder, dance, featured writer, fitness, jenn hicks, mental illness, movement, music, nia, patient story, psychotherapy -
The Portrait: Simple Yet Complex, Obvious Yet Profound Part 1: The Eyes
By Judith Leitner Over a century and a half ago, most folks were unable to create tangible visual links to their past. Many lacked the financial means necessary for creating pictorial inventories of themselves and their ancestors through the pricey art of Portrait Painting. Then, in 1839, Charles Daguerre in France and Henry Fox Talbot in England both announced that they had devised a way to ‘fix an image’, and the art and magic of Photography was born. With its affordable price tag, this clever novelty would enable everyman to express a primal, compelling need: to record, share and Read More…
Tagged Under: Alzheimer, Alzheimer's, art, camera, creative coping, dementia, detachment, featured writer, intimacy, judith leitner, lens, metaphors for illness, photography, portrait -
How Did I Quit Smoking? I Just Stopped!
By Sean McDermott I had quit smoking so many times that I decided not to use that word ever again and now when I hear people say that they have “quit”, I take it lightly and reserve comment. Quitting is something that you fear, something that you approach slowly and have a plan in place to overcome the odds, the mood swings, the cravings. I had no such thing. Let me give you some untypical background. In July of 2007 I arrived at Toronto Western Hospital in an ambulance dying of Liver Disease from Alcoholism. I know this because they Read More…
Tagged Under: AA, addiction, alcohol, alcoholism, change, drinking, featured writer, how i quit smoking, liver disease, liver transplant, organ donor, quitting, sean mcdermott, sobriety, toronto western hospital, transplant