For patients with rare diseases and the caregivers in healthcare who support them, skin changes often become a daily friction point rather than a simple cosmetic concern. The core tension…
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…
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…
Editor's Note: Patient Worthy is honored to share this article, originally submitted by Camille Johnson. For chronic disease patients living with rare conditions and long-term symptoms, whole-body health challenges can…
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,…
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,…
Editor's Note: Patient Worthy is honored to present this article, shared with us by our friends at the Steatotic Liver Foundation (formerly the Fatty Liver Foundation). To see this article…
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…
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