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…
Written When Diagnosed On January 15th, 2024 my life changed forever. I felt my right breast turn completely solid. I knew something wasn’t right, so I went to my doctor.…
In October 2021, I was diagnosed with a rare, possibly life-threatening autoimmune disease called Myasthenia gravis. Some people said I had to “reinvent myself,” because indeed I could not, and…
Editor’s Note: This is the second part of an ongoing story. The third and final part will be published Tuesday, June 25th. To read part one, click here. The initial…
In 2019 I presented with dark purple spots on my legs, and my neurologist decided to do lab work. My labs showed a high IGM level, so I was then…
Disclaimer: The views and opinions expressed in this article are those of the author and do not necessarily reflect the official policy or position of Patient Worthy. At just 5…
Editor's Note: This is the first part of an ongoing story. The second part will be published Tuesday, June 17th. The fluorescent lights of the hospital room hummed, a stark…
Three hundred and ten: The number of days we had prior to our lives forever changing. On April 13, 2022, it was a day like any other. My husband and…
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