For nearly two decades, I’ve been building and maintaining a global online community for individuals and families affected by Moebius syndrome, a rare neurological condition that most people have never…
Editor's Note: Patient Worthy is honored to share this piece from our friends at Elephants & Tea, originally written by Katie Newbaum. To see the article in its original format,…
My name is Maha, and I had the privilege of being my father’s — my Baba’s — caregiver. I’ll be blunt; it was tough. When you live in a developing…
I’ve always been a nature lover. I like nothing better than going for a hike in the woods or strolling along the beach or gazing at the mountains – or…
Editor's Note: Patient Worthy is honored to share this submission by Regina Portnoy, a clinical researcher with 20 years of experience working alongside patients. Many years ago, when I was…
I’ve always been an overachiever – someone who puts their mind to something and delivers more than was expected, someone who strives for greatness. I never wanted to be an…
I have battled several autoimmune and neurological conditions that are triggered by food and other factors for over 50 years. It took most of my life to reach not one,…
Editor's Note: Patient Worthy is pleased to share the final part in a series of excerpts by Dana Langston. Chapter 36: Holding the Line Knowing the surgery won't happen until…
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,…
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…
“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…
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…
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