Editor's Note: Patient Worthy is pleased to share part 4 of 5 in a series of excerpts written by Dana Langston. Part 7: Legacy & Final Gratitude Chapter 25: The…
Editor's Note: Patient Worthy is proud to bring you part 3 of 5 in a series of excerpts written by Dana Langston. Part 3: The Mental Battlefield Chapter 12: Doing…
Editor's Note: This is the second part in a series of excerpts written by Dana Langston. Chapter 4: The Internal Shift We are living in the "waiting room" now. The…
Editor's Note: The following is the first part of excerpt written and submitted to us by Dana Langston. There is a specific kind of internal battle that happens when you've…
My journey with cardiac amyloidosis started shortly after I retired as a firefighter/paramedic in spring 2018. I started with trigger fingers—one in 2018 and two more in 2020. Also in…
My whole life growing up, there was this specific buzzing sound that would come alive on the sunniest of days. I’ve been told over the years it’s because of everything…
On 12/12/2025, I was admitted into the ER for a thrombectomy due to a bilateral pulmonary embolism. While I am overweight and sometimes eat like a raccoon in the trash,…
This patient story is sponsored by Chiesi Global Rare Diseases and is promoted through the Patient Worthy Collaborative Content program. We only publish content that embodies our mission of providing…
Patients living with chronic or rare diseases and the caregivers coordinating appointments, medications, and daily life often carry a quiet question alongside the medical work: what will last beyond the…
I used to be really active: swimming, Tai Chi every week, practicing yoga. So, when I first felt persistent rib and back pain in late 2023, I assumed it was…
My diagnosis of rheumatic heart disease came on suddenly. I remember being 12, sitting at the doctor’s office, and was told that I have a heart murmur. At the time,…
Fight. I don’t think that those who aren’t in the Huntington’s Disease community understand what the word FIGHT truly means to those of us inside the community. We fight for…
My name is Amanda. I was diagnosed with a genetic connective tissue disease called Hypermobile Ehlers-Danlos Syndrome (h-EDS) about four years ago. However, the diagnosis was a decade in the…
My name is Faye. I’m blessed to be the wife of the love of my life, Brad, and the proud mom of two extraordinary boys we adopted in 2013—now teenagers…
Editor's Note: The views, thoughts, and opinions expressed in this article belong solely to the author and do not necessarily reflect the position of Patient worthy or any affiliated organization,…
Editor's Note: The following article was originally written by Kelly Curtin-Hallinan, and shared with us by our friends at Elephants & Tea. This past St. Patrick’s Day my daughter and…
Editor's Note: The following in from author Stephen Policoff, whose book A Ribbon for Your Hair is out today! Introduction When Stephen Policoff’s adopted daughter Anna was four, a freak…
“Do not go gentle into that good night. Rage, rage against the dying of the light.” --Dylan Thomas One may have thought, after six months under constant supervision in a…
You can not see, hear, or touch my rare condition. I STINK! (LITERALLY) I wasn’t sure if I was going to tell my story. But I cannot forget a seventeen-year-old…
Editor's Note: Patient Worthy is proud and honored to share Jennifer's story with cystic fibrosis and colon cancer, originally published on the Cystic Fibrosis Research Institute's website. It started like…
Editor's Note: This article was shared with us by our friends at Heal Canada. To see the article in its original format, please click here. James, 73, is a partner…
At 44 years old, I was ready to hit the reset button. In March of 2025, my partner and I stepped away from our careers. The decision wasn’t reckless, it…
As a little girl, I believed miracles only existed in movies. They felt distant, beautiful stories meant for someone else. I never imagined that my own life would one day…
Editor's Note: This story was submitted to Patient Worthy by Ghulam Ali, Founder & CEO, Muscular Dystrophy Pakistan. I am 35 years old and hold a Bachelor’s degree in Rural…
It started with an itch. When I was 26 years old (2001), I started having an itch on the bottom of my feet. It was brief at first, but then…
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