Editor's Note: Patient Worthy is honored to present this story by Heather Doyle, originally published by the United Porphyrias Association. To see the article in its original format, please click…
Editor's Note: This piece, originally written by Kayla DeSonier, was shared with us by our friends at Elephants & Tea. To see the article in its original format, please click…
Editor's Note: This article was shared with us by our friends at the Cure NF2 Foundation, in honor of May 22nd being World NF2 Awareness Day. To see the article…
What is Parkinson’s Disease – known as PD for short? Parkinson’s Disease was first discovered in 1817 by a British doctor named James Parkinson. From observations, he noticed 7 people…
Editor’s Note: This story was originally published on Linked-In and is shared with permission by Olga Lucia Torres. She waited an hour and fifteen minutes to see her doctor. When she…
I remember the day I realized something was wrong, as clearly as if it happened this past weekend. It was a beautiful morning in June. I was taking part in…
Editor's Note: Patient Worthy is honored to share this submission from Katie DiLorenzo, SVP, Patient and Pharmacy Services, PANTHERx® Rare. If you’re living with a rare disease or caring for…
Patient Worthy is honored to reprint this selection from The Cancer Dietitian, by Julie Lanford MPH, RD, CSO, LDN. It’s important to know that no single food or nutrient can cause…
I am sharing my journey to give a voice to patients who suffer from extreme poly-pathology and are often left behind by the medical system. I know that my medical…
Editor's Note: This story was originally published on Linked-In and is shared with permission by Olga Lucia Torres. In college, a clinician told me I was overdoing it. Then moved…
Editor's Note: Patient Worthy is honored to present this article, shared with us by our friends at the Seena Magowitz Foundation. When doctors diagnosed Michael Fitzpatrick with pancreatic neuroendocrine tumors…
Editor's Note: Patient Worthy is honored to share this story submitted to us by Regina Portnoy, a clinical researcher with over 20 years of experience. Every year, as Mother’s Day…
Editor's Note: Patient Worthy is honored to share this patient story from our friends at Elephants & Tea. To see the story in its original format, please click here. This…
Editor's Note: Patient Worthy is honored to share this article from our friends at the Brighter Hope Foundation. To see the article in its original format, please click here. Sir’Savion…
On January 20, 2014, at 54 years old, I experienced what I casually called an “anxiety numbness event.” My left thumb and index finger went numb, followed by my left…
My story began very suddenly on May 4th, 2025, when I was home from graduate school visiting my family. It had been a great day, shopping and enjoying dinner at…
Most people see the bed first. That’s what defines me to them. The bed in the living room, the fact that I’m always in it. When they picture me, they…
I was born in Long Island, New York, and raised in Southern California, where I grew up surrounded by sunshine and the beauty of the ocean. For the past 14…
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…
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