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Author: Patient Worthy Contributor

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“I Won’t Let This Define Me.”

“I Won’t Let This Define Me.”

  • Post author:Patient Worthy Contributor
  • Post published:June 30, 2026
  • Post category:Triple-negative breast cancer

Editor's Note: Patient Worthy is honored to share this story from our friends at Elephants & Tea, originally written by Amy Hoffmann — a survivor of triple-negative breast cancer. To…

Continue Reading “I Won’t Let This Define Me.”
The Future of Disease Understanding Starts with Listening

The Future of Disease Understanding Starts with Listening

  • Post author:Patient Worthy Contributor
  • Post published:June 29, 2026
  • Post category:COVID-19

Editor's Note: Patient Worthy is honored to share this article, provided by our friends at the TREND Community. To see the article in its original format, please click here. Healthcare…

Continue Reading The Future of Disease Understanding Starts with Listening
PATIENT INPUT NEEDED: Pituitary Adenoma vs. PitNET Nomenclature Change

PATIENT INPUT NEEDED: Pituitary Adenoma vs. PitNET Nomenclature Change

  • Post author:Patient Worthy Contributor
  • Post published:June 29, 2026
  • Post category:Acromegaly

Editor's Note: This article is brought to you by our friends at the Acromegaly Community, and shared with our audience at their request. To learn more about acromegaly, please visit…

Continue Reading PATIENT INPUT NEEDED: Pituitary Adenoma vs. PitNET Nomenclature Change
Les’ Journey with Cardiomyopathy

Les’ Journey with Cardiomyopathy

  • Post author:Patient Worthy Contributor
  • Post published:June 26, 2026
  • Post category:Hypertrophic Cardiomyopathy

My name is Les Howard, and I am living with hypertrophic obstructive cardiomyopathy (HCM).  Looking back, I believe I may have lived with HCM for most of my life without knowing…

Continue Reading Les’ Journey with Cardiomyopathy
Supporting Siblings Through Loss: Remembering My Sister Heidi

Supporting Siblings Through Loss: Remembering My Sister Heidi

  • Post author:Patient Worthy Contributor
  • Post published:June 22, 2026
  • Post category:Microcephaly

Editor's Note: This article was shared with us by our friends at the Courageous Parents Network. To see the article in its original format, please click here. My older sister…

Continue Reading Supporting Siblings Through Loss: Remembering My Sister Heidi
Hereditary Cancer Risk Is Harder to Detect When Family History Crosses Borders

Hereditary Cancer Risk Is Harder to Detect When Family History Crosses Borders

  • Post author:Patient Worthy Contributor
  • Post published:June 18, 2026
  • Post category:Lynch syndrome

I grew up believing health was something you could control if you were disciplined enough. In my Chinese immigrant family, my father talked constantly about how fried food and Western…

Continue Reading Hereditary Cancer Risk Is Harder to Detect When Family History Crosses Borders
Fabry International Network’s Young Adult Guidebook

Fabry International Network’s Young Adult Guidebook

  • Post author:Patient Worthy Contributor
  • Post published:June 15, 2026
  • Post category:Fabry Disease

Website: https://fabrynetwork.org/youngadults Instagram Young Adults: @fabryyoungadults Instagram FIN: @fabryintnetwork 11 June 2026 - FIN launches international Young Adults Guidebook created by and for young adults living with Fabry disease. Young…

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You Are More Than Your Diagnosis: A Message From a Mom With Multiple Myeloma

You Are More Than Your Diagnosis: A Message From a Mom With Multiple Myeloma

  • Post author:Patient Worthy Contributor
  • Post published:June 11, 2026
  • Post category:Rare Disease

The questions I get asked the most are “How did it start?” “Did you have any symptoms?” “How did they find it?” For five years before my life-altering diagnosis, my…

Continue Reading You Are More Than Your Diagnosis: A Message From a Mom With Multiple Myeloma
“Hello, My Name Is”

“Hello, My Name Is”

  • Post author:Patient Worthy Contributor
  • Post published:June 10, 2026
  • Post category:Rare Disease

Editor's Note: This article was originally written and shared with us by Nick Leon of Naked Eye, and is shared here with gratitude. To see the article in its original…

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Duchenne Families Made the Sacrifices Asked. FDA Withheld the Hope.

Duchenne Families Made the Sacrifices Asked. FDA Withheld the Hope.

  • Post author:Patient Worthy Contributor
  • Post published:June 9, 2026
  • Post category:Duchenne Muscular Dystrophy

Editor's Note: This story was submitted to us by Angelina Olivera, the mom of a 14-year-old with Duchenne muscular dystrophy, and the sister of two brothers who died from Duchenne…

Continue Reading Duchenne Families Made the Sacrifices Asked. FDA Withheld the Hope.
The Child Who Defied the Textbooks

The Child Who Defied the Textbooks

  • Post author:Patient Worthy Contributor
  • Post published:June 8, 2026
  • Post category:Rare Disease

The human body is governed by an ancient, rapid-response defense system. When an invader attacks, the innate immune system rushes to the front lines like firefighters to a blaze. But…

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Dear Cancer, Three Years Have Gone By

Dear Cancer, Three Years Have Gone By

  • Post author:Patient Worthy Contributor
  • Post published:June 8, 2026
  • Post category:Hodgkin Lymphoma

Editor's Note: This story was originally written by Julia Alessandrine—a survivor of Hodgkins Lymphoma—and shared with us by our friends at Elephants & Tea. To see the article in its…

Continue Reading Dear Cancer, Three Years Have Gone By
The Heart Behind Every Clinical Trial

The Heart Behind Every Clinical Trial

  • Post author:Patient Worthy Contributor
  • Post published:June 7, 2026
  • Post category:Rare Disease

Editor's Note: This article was submitted to us by Regina Portnoy. A clinical trial may be remembered for a breakthrough treatment, a new therapy, or a headline-making discovery. But its…

Continue Reading The Heart Behind Every Clinical Trial
From Denial to Balance: My Journey with Lupus

From Denial to Balance: My Journey with Lupus

  • Post author:Patient Worthy Contributor
  • Post published:June 5, 2026
  • Post category:Lupus

Looking back, the signs were there long before I was diagnosed with lupus. As a child, I struggled with gastrointestinal issues and a variety of symptoms that suggested something wasn't…

Continue Reading From Denial to Balance: My Journey with Lupus
A Systemic Mastocytosis Journey: From Diagnosis to Advocacy

A Systemic Mastocytosis Journey: From Diagnosis to Advocacy

  • Post author:Patient Worthy Contributor
  • Post published:June 5, 2026
  • Post category:mastocytosis

Editor's Note: Patient Worthy is honored to present this story, shared with us by our friends at The Mast Cell Disease Society. To see the article in its original format,…

Continue Reading A Systemic Mastocytosis Journey: From Diagnosis to Advocacy
Daraxonrasib Is Promising. But Here’s What Pancreatic Cancer Patients Need to Know First

Daraxonrasib Is Promising. But Here’s What Pancreatic Cancer Patients Need to Know First

  • Post author:Patient Worthy Contributor
  • Post published:June 4, 2026
  • Post category:Pancreatic Cancer

By Dr. Avishek Kumar When someone hears there may finally be a breakthrough for pancreatic cancer, the natural reaction is hope. In clinic, however, I often see what comes next.…

Continue Reading Daraxonrasib Is Promising. But Here’s What Pancreatic Cancer Patients Need to Know First
Should vs. Want: Guiding Insights from a Palliative Care Clinician

Should vs. Want: Guiding Insights from a Palliative Care Clinician

  • Post author:Patient Worthy Contributor
  • Post published:June 3, 2026
  • Post category:MPS III (Sanfilippo Syndrome)

Editor's Note: This article was originally written by Joanne Huff, and shared with us by our friends at the Courageous Parents Network. To see the article in its original format,…

Continue Reading Should vs. Want: Guiding Insights from a Palliative Care Clinician
Hidden for Six Weeks: How My Brain Injury Revealed Itself

Hidden for Six Weeks: How My Brain Injury Revealed Itself

  • Post author:Patient Worthy Contributor
  • Post published:June 2, 2026
  • Post category:Rare Disease

To this day, I still don't remember the car accident that changed my life. It was Thursday, August 8, 2024 — a day like any other. I'd gone to BioFit,…

Continue Reading Hidden for Six Weeks: How My Brain Injury Revealed Itself
International Clinical Trials Day

International Clinical Trials Day

  • Post author:Patient Worthy Contributor
  • Post published:June 1, 2026
  • Post category:Cystic Fibrosis

Editor's Note: This article was originally written and shared with us by Caleigh Haber. This day hits really close to home for me. I was born with Cystic Fibrosis in…

Continue Reading International Clinical Trials Day
Her Final Year: What Love Looked Like When We Didn’t Have Answers

Her Final Year: What Love Looked Like When We Didn’t Have Answers

  • Post author:Patient Worthy Contributor
  • Post published:May 23, 2026
  • Post category:porphyria

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…

Continue Reading Her Final Year: What Love Looked Like When We Didn’t Have Answers
Beyond Your Grip

Beyond Your Grip

  • Post author:Patient Worthy Contributor
  • Post published:May 22, 2026
  • Post category:Breast Cancer

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…

Continue Reading Beyond Your Grip
The Silent Struggle – Mental Wellness in NF2 Surgery

The Silent Struggle – Mental Wellness in NF2 Surgery

  • Post author:Patient Worthy Contributor
  • Post published:May 22, 2026
  • Post category:Neurofibromatosis Type 2

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…

Continue Reading The Silent Struggle – Mental Wellness in NF2 Surgery
Claudine’s Journey with Parkinson’s Disease

Claudine’s Journey with Parkinson’s Disease

  • Post author:Patient Worthy Contributor
  • Post published:May 19, 2026
  • Post category:Parkinson's Disease

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…

Continue Reading Claudine’s Journey with Parkinson’s Disease
How to Advocate for Yourself During Appointments

How to Advocate for Yourself During Appointments

  • Post author:Patient Worthy Contributor
  • Post published:May 16, 2026
  • Post category:Rare Disease

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…

Continue Reading How to Advocate for Yourself During Appointments
Connor’s Leukodystrophy Story

Connor’s Leukodystrophy Story

  • Post author:Patient Worthy Contributor
  • Post published:May 15, 2026
  • Post category:Leukodystrophy

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
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