Connor’s Leukodystrophy Story
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…
Continue Reading
Connor’s Leukodystrophy Story
Fighting for Himself and Others: Wojciech’s Battle Against Crohn’s Disease and More
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…
Continue Reading
Fighting for Himself and Others: Wojciech’s Battle Against Crohn’s Disease and More
Dismissal, Derision, and Misdiagnosis: Olga’s Lupus Story
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…
Continue Reading
Dismissal, Derision, and Misdiagnosis: Olga’s Lupus Story
The Timeless Passages of My Mind and Soul
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…
Continue Reading
The Timeless Passages of My Mind and Soul
Listening to the Quiet Signs: A Twelve-Year Journey to Answers
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…
Continue Reading
Listening to the Quiet Signs: A Twelve-Year Journey to Answers
Against All Odds: Madison’s Victory Against a Hepatic Adenoma
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…
Continue Reading
Against All Odds: Madison’s Victory Against a Hepatic Adenoma
Health Benefits of Putting Feelings to Words
Putting feelings into words does more than help you reflect. Brain imaging research shows it can shift activity inside emotional circuits. If you are someone who journals or does any…
Continue Reading
Health Benefits of Putting Feelings to Words
“I Am More Than the Person in the Bed” – Kristian’s Message to the World
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…
Continue Reading
“I Am More Than the Person in the Bed” – Kristian’s Message to the World
“Not Defined By His Disability:” What Bennett Has Taught His Family About Spinal Muscular Atrophy
Editor's Note: Patient Worthy is honored to share this article from our friend Jessica Lynn. To see the article in its original format, please click here. When five-year-old Bennett hit…
Continue Reading
“Not Defined By His Disability:” What Bennett Has Taught His Family About Spinal Muscular Atrophy
Throwback Thursday: Updates on Patients from Patient Worthy’s Past
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…
Continue Reading
Throwback Thursday: Updates on Patients from Patient Worthy’s Past
Jimi’s Fight Against Bladder Cancer
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…
Continue Reading
Jimi’s Fight Against Bladder Cancer
Awareness Isn’t the Hard Part — What 18 Years in the Moebius Syndrome Community Has Taught Me
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…
Continue Reading
Awareness Isn’t the Hard Part — What 18 Years in the Moebius Syndrome Community Has Taught Me
Choosing Hope
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,…
Continue Reading
Choosing Hope
5 Lessons Nature Taught Me About Living with Pain and Dystonia
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…
Continue Reading
5 Lessons Nature Taught Me About Living with Pain and Dystonia
What We Carry With Us: The Lesson of the Quilt
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…
Continue Reading
What We Carry With Us: The Lesson of the Quilt
What Happens When a Patient Is Living with Multiple Rare Diseases?
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,…
Continue Reading
What Happens When a Patient Is Living with Multiple Rare Diseases?
Can We Fix This Broken Heart? – Part 5
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…
Continue Reading
Can We Fix This Broken Heart? – Part 5
Can We Fix This Broken Heart? – Part 4
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…
Continue Reading
Can We Fix This Broken Heart? – Part 4
Can We Fix This Broken Heart? – Part 3
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…
Continue Reading
Can We Fix This Broken Heart? – Part 3
Can We Fix This Broken Heart? – Part 2
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…
Continue Reading
Can We Fix This Broken Heart? – Part 2
Can We Fix This Broken Heart? – Part 1
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…
Continue Reading
Can We Fix This Broken Heart? – Part 1
Ron’s Fight Against Amyloidosis
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…
Continue Reading
Ron’s Fight Against Amyloidosis
The Sun Sucks, But You Do Not
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…
Continue Reading
The Sun Sucks, But You Do Not
Rachel’s DVT and Pulmonary Embolism Experience
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,…
Continue Reading
Rachel’s DVT and Pulmonary Embolism Experience
The Mentor She Wished She Had – How Elizabeth Became a Lifeline for EB Families
This patient story is sponsored by Chiesi Global Rare Diseases and is promoted through the Patient Worthy Collaborative Content program. We only publish content that embodies our mission of providing…
Continue Reading
The Mentor She Wished She Had – How Elizabeth Became a Lifeline for EB Families
- 1
- 2
- 3
- 4
- …
- 20
- Go to the next page
