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…
Editor's Note: This article was shared with Patient Worthy by our friends at Elephants & Tea. It was originally written by Jenny Gomez, a breast cancer survivor. To see the…
My name is Gretchen Burnett, & I survived a rare spinal bone infection called Salmonella osteomyelitis. Less than 2% of people with spinal involvement survive it. It nearly took my…
As far as I can remember, I have always had an intolerance of heat and cold. I can remember at a young age not wanting to go outside in the…
For most of my life — starting when I was eight years old — I lived with a deep burning pain in my hands that felt like holding hot coals.…
Editor's Note: Patient Worthy is proud to share part 10 of 10 of Elena Genik's blog, detailing her journey with Graves disease and thyroid eye disease. Healing Is More Than…
Rare Disease Month is deeply personal to our family. Before Pruitt, our youngest son, we had never heard of Ornithine Transcarbamylase (OTC) Deficiency, nor did we truly understand how fragile…
Sharing My Stripes 🦓 This Rare Disease Month, I'm honored to share my journey living as someone with a rare disease and what Rare Disease Month means to me. This…
Editor's Note: Patient Worthy is honored to share part 9 of 10 of Elena Genik's blog documenting her experiences with Graves disease and thyroid eye disease. A Missing Piece in…
Hi! My name is Tessa, and I have a rare disease called Acromegaly. My journey started in 2015 when we discovered I had a 9x10x12 tumor growing on my pituitary…
Editor's Note: The above photograph is credited to Patient Voice. “Ringing the bell” is an enduring image associated with cancer survivorship. It represents victory, celebration and the end of treatment.…
Editor’s Note: Patient Worthy is honored to share part 6 of 10 of Elena Genik’s series of blog posts detailing her journey with Graves disease and thyroid eye disease. The Turning Point There…
When my son was eight months old, he had already been hospitalized more times than I can count for infections that seemed far too severe for a baby. Ear infections,…
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