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.…
Acknowledgement: Patient Worthy is honored to share this story by Erika Stariha, Co-Founder and President of SATB2 Europe. This is Urban, my teenage firstborn. He is joyful. Curious. Full of…
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…
Kevan Chandler, was born with a rare, and progressive neuromuscular disease: spinal muscular atrophy (SMA). At age 33, he needs assistance with almost all activities of daily living, from eating…
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,…
Danielle’s baby boy had a long and terrifying seizure on the 4th of July six years ago. The family was at her mother’s home. Both Danielle and her mother are…
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…
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.…
The Vancouver Island community has come together in an emotional show of support for nine-year-old Charleigh Pollock after news broke that the B.C. government is discontinuing coverage of the only…
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…
Patient Worthy is grateful to our partner Elephants & Tea for providing the following article by Laura DeKraker Lang-Ree, a cancer caregiver to her daughter Cecilia who survived childhood leukemia.…
Mama we are all different colors and we are all beautiful. For our final Throwback Thursday we bring to you the story of Mariana, a young girl diagnosed with Pfeiffer…
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.…
I had learned that the many twists and turns on our rare disease path were similar to the families we met Originally published on May 11, 2022, this article explores celebrates author…
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…
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…
Patients are often caught in a system of impersonal treatment when the "business" of medicine and health insurance predominate over human health. It is extremely rare today for physicians to…
Hello, my name is Melissa. My journey with scleroderma began with symptom onset in 2008. I sought immediate care from a rheumatologist, but was not diagnosed until 2017 with undifferentiated…
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