In the shadows of his weight struggles, Sean Mulroney’s journey began at the staggering weight of 687 pounds in 2016. It was a weight that felt like a shackle, chaining…
I’ve spoken regularly with family members and friends about my sons and their diagnosis and about our real-world struggles. I’ve advocated for them at our local pediatrician’s office, educated our…
Jhonnatan's recent journey with gastric cancer at age 36 ignited a passion within him to share his story and advocate for others. What began as a personal effort to keep…
In 2019, I left my job to start working for myself. Things were going well until March 2020, when the pandemic hit. In January of 2021, I said to myself,…
I am a caregiver to my wonderful husband, Bryan. Our journey began at a rapid pace after a trip to the ER and a CT scan revealed he had stage…
In the spring of 2013, as a Creative Writing Major, for my senior thesis I got to write any type of creative piece of my choosing. I chose to write…
Life has a way of catching us off guard when we least expect it. For me, it all started with severe stomach pains that led to an unexpected hospital visit.…
When you become a parent, your life changes in an instant. You’re no longer just living for yourself—you’re living for your child. A fierce and unwavering instinct takes over, a…
I was diagnosed with Type-1 narcolepsy when I was 20 years old. At the time, I was living in Germany, dancing as a professional ballet dancer in an opera house.…
Our youngest son, Jace, is 11 years old with Duchenne Muscular Dystrophy. It is a fatal muscle-wasting disease, and there is currently no cure. We were given the diagnosis on…
Acknowledgement: This poem, originally written by Olivia Thompson, was provided to Patient Worthy by our friends at Elephants & Tea. To see the original, please click here. One welcomes a…
Acknowledgement: This article was originally written by Gillian Sapia, a mother of a child living with galactosemia, for Underground Rare Road. To see the original article, please click here. When…
Editor's Note: Patient Worthy is honored to share this patient story, which comes to us from our partners at PKD-Free Alliance. Polycystic kidney disease (PKD) has been part of my…
Acknowledgement: This article was shared with Patient Worthy by our friends at Stork Genetics. To see the original article, please click here. For more information about women affected by X-linked…
Editor's Note: This story was originally authored by Natalie H., a cancer survivor and loving mother of two. They say cancer changes everything. I’ve learned it doesn’t just change you,…
I live with a rare, genetic disease called familial chylomicronemia syndrome, or FCS, which prevents my body from breaking down fats and removing triglycerides from my bloodstream. FCS is inherited…
“I have to be dying”, I said earnestly to my husband for the second time that year, “at the very least, I don’t think there is much more pain I…
This article was originally published on Ask the Patient. Welcome to the inaugural post of “Ask the Patient.” As a cancer survivor who has experienced medical gaslighting, medical bias, negligent…
My name is Kelly Baughman, and I grew up in a small town in Louisiana—tight-knit, faith-driven, and yes, I went to church and summer camp with the Duck Dynasty family.…
In 2017, Jamie Shultz was feeling on top of the world. She was 25 years old, engaged to the man of her dreams, had just passed the Bar exam, and…
My name is May, and I was diagnosed with lung cancer in May of 2022. I was 37 years old — a wife, a mother to a toddler, and someone…
I often find myself initially stuck on where to start when telling our story. I say “our” because that’s the truth of this rare disease journey: everyone who touches Natalie’s…
Editor's Note: Patient Worthy is honored to bring you this article originally authored by Shannon Cloud, Patient Advocacy Director of the Dravet Syndrome Foundation. A few words spoken. Sharing an…
Patient Worthy is grateful to our partner Elephants & Tea for providing the following article by Brittany Wilson, a stage 3A Melanoma, R-ISS stage 2 IgG Lambda Myeloma patient and…
Editor’s Note: This is the third and final part of a caregiver story-share. To read part one, click here. For part two, click here. These moments of light, these tiny…
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