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Author: Patient Worthy Contributor

This author has written 2471 articles
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Living with gMG: Lessons from William, a Nurse and Patient

Living with gMG: Lessons from William, a Nurse and Patient

  • Post author:Patient Worthy Contributor
  • Post published:January 6, 2026
  • Post category:Myasthenia Gravis

I've always known that I wanted to help people. Growing up as the son of a veterinarian and a high school teacher who later became a physician assistant, all with…

Continue Reading Living with gMG: Lessons from William, a Nurse and Patient
My Journey With MASH

My Journey With MASH

  • Post author:Patient Worthy Contributor
  • Post published:December 29, 2025
  • Post category:Nonalcoholic fatty liver disease

  I'm Nella, and this is part of my journey with Metabolic dysfunction-associated steatohepatitis (MASH). I was diagnosed with MASH in early 2024, after being referred to a GI doctor…

Continue Reading My Journey With MASH
Turning Painful Scars into Guiding Stars: Beverly’s Journey with Dystonia

Turning Painful Scars into Guiding Stars: Beverly’s Journey with Dystonia

  • Post author:Patient Worthy Contributor
  • Post published:December 26, 2025
  • Post category:Dystonia

Editor's Note: This story share was submitted by Beverly Smith, a retired schoolteacher from Canada. I was diagnosed after treatment for PTSD and having had a strange rash. The cause…

Continue Reading Turning Painful Scars into Guiding Stars: Beverly’s Journey with Dystonia
Raspberry Sorbet Swirls in the Sky

Raspberry Sorbet Swirls in the Sky

  • Post author:Patient Worthy Contributor
  • Post published:December 25, 2025
  • Post category:Colorectal cancer

Editor's Note: This poem, originally written by Spence Shishido, was shared with Patient Worthy by our friends at Elephants & Tea. To see the poem in its original format, please…

Continue Reading Raspberry Sorbet Swirls in the Sky
An Unexpected Liver Transplant Part 4 – The Journey to Disney World

An Unexpected Liver Transplant Part 4 – The Journey to Disney World

  • Post author:Patient Worthy Contributor
  • Post published:December 22, 2025
  • Post category:Rare Disease

“We’re going to Disney World!” That's what all the winners say, right? When the big game is over and the team has won the championship, the winners say, for a…

Continue Reading An Unexpected Liver Transplant Part 4 – The Journey to Disney World
Jenna’s Journey with Neuroendocrine Tumors (NETs)

Jenna’s Journey with Neuroendocrine Tumors (NETs)

  • Post author:Patient Worthy Contributor
  • Post published:December 8, 2025
  • Post category:Neuroendocrine Tumors of Gastroenteric or Pancreatic Origin

I'm Jenna, a 36-year-old married mother of one son, and I have neuroendocrine cancer (NETs). It is a rare type of cancer, and 60% of the time, once a person…

Continue Reading Jenna’s Journey with Neuroendocrine Tumors (NETs)
Danielle’s Story Living with Stage 3 MASH

Danielle’s Story Living with Stage 3 MASH

  • Post author:Patient Worthy Contributor
  • Post published:November 19, 2025
  • Post category:Metabolic dysfunction-associated steatohepatitis

My name is Danielle, and in 2021, I was diagnosed with Stage 3 MASH, a life-threatening liver disease. I consider myself lucky because I had no real symptoms; my MASH was…

Continue Reading Danielle’s Story Living with Stage 3 MASH
Rare Disease Day: My hATTR Amyloidosis Story
source: Diane Wilkie

Rare Disease Day: My hATTR Amyloidosis Story

  • Post author:Patient Worthy Contributor
  • Post published:November 19, 2025
  • Post category:Amyloidosis/Hereditary ATTR Amyloidosis

Written by Diane Wilkie My hATTR story began in the mid-1960’s when my father, a healthy, strong, outdoorsy guy in his late 40’s started tripping, experiencing numbness, and having dizzy…

Continue Reading Rare Disease Day: My hATTR Amyloidosis Story
Nicole B.’s Journey with Crohn’s & Fibromyalgia

Nicole B.’s Journey with Crohn’s & Fibromyalgia

  • Post author:Patient Worthy Contributor
  • Post published:November 6, 2025
  • Post category:Crohn's disease

I’ve suffered from Crohn's and fibromyalgia since I was a child. I was told I had “food allergies.” My fibromyalgia was hidden from me until adulthood. In 2020, I was…

Continue Reading Nicole B.’s Journey with Crohn’s & Fibromyalgia
“Three Things I Tell Newly Diagnosed Ulcerative Colitis Patients” by Laura Scaviola

“Three Things I Tell Newly Diagnosed Ulcerative Colitis Patients” by Laura Scaviola

  • Post author:Patient Worthy Contributor
  • Post published:November 3, 2025
  • Post category:ulcerative Colitis

I’ll never forget the day I was told I have ulcerative colitis. Suddenly, I had both an answer and a thousand new questions. There are a lot of emotions that…

Continue Reading “Three Things I Tell Newly Diagnosed Ulcerative Colitis Patients” by Laura Scaviola
When to Consider Exploring Clinical Trials with a Rare Diagnosis
source: Maria Palombini

When to Consider Exploring Clinical Trials with a Rare Diagnosis

  • Post author:Patient Worthy Contributor
  • Post published:October 31, 2025
  • Post category:Cancer/Neuroblastoma

Written by Maria Palombini Answer: at the time of diagnosis, it should be one of the first actions you, the patient and/or caregiver, should take. Why? Receiving a diagnosis with…

Continue Reading When to Consider Exploring Clinical Trials with a Rare Diagnosis
“A Letter to My 2020 Self”

“A Letter to My 2020 Self”

  • Post author:Patient Worthy Contributor
  • Post published:October 30, 2025
  • Post category:Cancer

Editor's Note: Patient Worthy is proud to share this blog post by Carmen D., a cancer survivor and affectionately known as The Chemo Diva. To see the article in its…

Continue Reading “A Letter to My 2020 Self”
From Scars to Strength: My Journey Toward Visibility and Healing

From Scars to Strength: My Journey Toward Visibility and Healing

  • Post author:Patient Worthy Contributor
  • Post published:October 28, 2025
  • Post category:Rare Disease

Sometimes our greatest lessons come from the moments that change us forever. Healing has not happened all at once for me. It has been a lifelong journey that began with…

Continue Reading From Scars to Strength: My Journey Toward Visibility and Healing
“Being Okay” – Kylie’s NF1 Journey

“Being Okay” – Kylie’s NF1 Journey

  • Post author:Patient Worthy Contributor
  • Post published:October 23, 2025
  • Post category:Neurofibromatosis Type 1

When we are faced with an obstacle, big or small, we supposedly pick one of two options: to fight it or to run away. Nowadays, they say there are more…

Continue Reading “Being Okay” – Kylie’s NF1 Journey
Kaye Lynn VanAntwerp’s Fiery Battle Against Metastatic Colorectal Cancer

Kaye Lynn VanAntwerp’s Fiery Battle Against Metastatic Colorectal Cancer

  • Post author:Patient Worthy Contributor
  • Post published:October 20, 2025
  • Post category:Colorectal cancer

My story is like so many other's stories: healthy, semi-young, active, usually chose the salad over the fries, parked farther away in the parking lot to get some extra steps…

Continue Reading Kaye Lynn VanAntwerp’s Fiery Battle Against Metastatic Colorectal Cancer
Rady’s Lupus Journey: Carried by Faith, Fueled by Hope

Rady’s Lupus Journey: Carried by Faith, Fueled by Hope

  • Post author:Patient Worthy Contributor
  • Post published:October 17, 2025
  • Post category:Lupus

I came to the United States from the Philippines in June 2016, full of excitement and dreams. I was ready to build a new life, work hard, and create something…

Continue Reading Rady’s Lupus Journey: Carried by Faith, Fueled by Hope
My Diagnosis Didn’t Silence Me, It Lit a Fire

My Diagnosis Didn’t Silence Me, It Lit a Fire

  • Post author:Patient Worthy Contributor
  • Post published:October 13, 2025
  • Post category:Lupus

Editor's Note: Patient Worthy is proud to bring you this story-share, originally written by Gwen Pike, founder of the podcast Empowerment in Illness. When I was in my twenties, life was…

Continue Reading My Diagnosis Didn’t Silence Me, It Lit a Fire
Living with Brugada Syndrome

Living with Brugada Syndrome

  • Post author:Patient Worthy Contributor
  • Post published:October 10, 2025
  • Post category:Brugada syndrome

Editor's Note: Patient Worthy is honored to bring you this patient story-share from Michael Grivas. For more information and resources, please visit the SADS Foundation. My name is Michael Grivas,…

Continue Reading Living with Brugada Syndrome
The Fight for Life: Sean Mulroney’s Battle Against the Odds

The Fight for Life: Sean Mulroney’s Battle Against the Odds

  • Post author:Patient Worthy Contributor
  • Post published:October 3, 2025
  • Post category:Obesity

In the shadows of his weight struggles, Sean Mulroney’s journey began at the staggering weight of 687 pounds in 2016. It was a weight that felt like a shackle, chaining…

Continue Reading The Fight for Life: Sean Mulroney’s Battle Against the Odds
Christena’s Caregiver Journey for Two Boys with DMD

Christena’s Caregiver Journey for Two Boys with DMD

  • Post author:Patient Worthy Contributor
  • Post published:October 1, 2025
  • Post category:Duchenne Muscular Dystrophy

I’ve spoken regularly with family members and friends about my sons and their diagnosis and about our real-world struggles. I’ve advocated for them at our local pediatrician’s office, educated our…

Continue Reading Christena’s Caregiver Journey for Two Boys with DMD
Jhonnatan’s Fight Against Gastric Cancer

Jhonnatan’s Fight Against Gastric Cancer

  • Post author:Patient Worthy Contributor
  • Post published:September 30, 2025
  • Post category:Stomach Cancer

Jhonnatan's recent journey with gastric cancer at age 36 ignited a passion within him to share his story and advocate for others. What began as a personal effort to keep…

Continue Reading Jhonnatan’s Fight Against Gastric Cancer
Brian’s Journey with Mantle Cell Lymphoma

Brian’s Journey with Mantle Cell Lymphoma

  • Post author:Patient Worthy Contributor
  • Post published:September 29, 2025
  • Post category:Mantle Cell Lymphoma

In 2019, I left my job to start working for myself. Things were going well until March 2020, when the pandemic hit. In January of 2021, I said to myself,…

Continue Reading Brian’s Journey with Mantle Cell Lymphoma
Terri and Bryan’s Fight Against Colon Cancer

Terri and Bryan’s Fight Against Colon Cancer

  • Post author:Patient Worthy Contributor
  • Post published:September 24, 2025
  • Post category:Colorectal cancer

I am a caregiver to my wonderful husband, Bryan. Our journey began at a rapid pace after a trip to the ER and a CT scan revealed he had stage…

Continue Reading Terri and Bryan’s Fight Against Colon Cancer
Leanna’s Story with NF2-Related Schwannomatosis

Leanna’s Story with NF2-Related Schwannomatosis

  • Post author:Patient Worthy Contributor
  • Post published:September 20, 2025
  • Post category:Schwannomatosis

In the spring of 2013, as a Creative Writing Major, for my senior thesis I got to write any type of creative piece of my choosing. I chose to write…

Continue Reading Leanna’s Story with NF2-Related Schwannomatosis
SilvaStrong: Unveiling the Unexpected

SilvaStrong: Unveiling the Unexpected

  • Post author:Patient Worthy Contributor
  • Post published:September 17, 2025
  • Post category:Cancer

Life has a way of catching us off guard when we least expect it. For me, it all started with severe stomach pains that led to an unexpected hospital visit.…

Continue Reading SilvaStrong: Unveiling the Unexpected
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You Are Not Alone: Empowering the Advanced Kidney Cancer Community
Finding Light Through Story-The Power of Ambassadorship in the Endometrial Cancer Community
*cancer that cannot be removed with surgery or has spread to other parts of the body. GEJ= gastroesophageal junction (where the esophagus joins the stomach)
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