Amanda’s Epilepsy Journey
Diagnosis and year of diagnosis I was diagnosed with epilepsy in 2000, and I have been living with epilepsy for more than 26 years. My journey has included countless seizures,…
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Amanda’s Epilepsy Journey
The Unknown of It All
Editor's Note: Patient Worthy is honored to share this story from our friends at Elephants & Tea. Originally written by Mellory Torres, a survivor of acute lymphocytic leukemia, the article…
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The Unknown of It All
More Than 50 Surgeries and Still Becoming
My name is Kelli Frederick, M.A., and I have lived with neurofibromatosis for my entire life. I have also undergone more than 50 facial surgeries. When you live with a…
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More Than 50 Surgeries and Still Becoming
Becoming the Patient: How Lung Cancer Changed My Life, My Purpose, and My Voice
Editor's Note: Patient Worthy is honored to share this patient story, submitted to us by Shelly Glenn. For most of my career, I worked on the other side of cancer.…
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Becoming the Patient: How Lung Cancer Changed My Life, My Purpose, and My Voice
Vanessa’s Acoustic Neuroma Story
There are parts of 2024 that I know only through photographs and the stories my sister has told me. In some of the pictures, I am lying in a hospital…
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Vanessa’s Acoustic Neuroma Story
How One XLH Diagnosis Sparked Conversations Across Three Generations
Editor's Note: Patient Worthy is pleased to share this story, submitted to us by Connie B. What if one diagnosis could change the way an entire family understands its past,…
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How One XLH Diagnosis Sparked Conversations Across Three Generations
Body Bound by Earth, Mind Master of the Cosmos: My Journey with LGMD2R
My name is A. Sabesan. I am 25 years old, living in Chennai, Tamil Nadu, India. Up until the age of 18, my life was completely ordinary. But at 19,…
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Body Bound by Earth, Mind Master of the Cosmos: My Journey with LGMD2R
Seen, Heard, and Believed: Why the Patient Voice Matters
Editor's Note: The following story was submitted to us by Pam Mason, Patient Speaker & Advocate. If you looked at a picture of me, you probably wouldn't see someone who…
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Seen, Heard, and Believed: Why the Patient Voice Matters
Becky’s Journey with Metastatic Colon Cancer
I’ve survived Stage 4 colon cancer for about 10 years. I went to the doctor for a routine colonoscopy. They said I had a long colon, and they could get…
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Becky’s Journey with Metastatic Colon Cancer
I Live With LGMD. I Want Patients to Help Shape What Comes Next.
When I was seven, my parents were trying to understand why I was becoming ill. I spent time in hospitals and underwent painful muscle biopsies. Doctors knew I had a…
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I Live With LGMD. I Want Patients to Help Shape What Comes Next.
The Weight of Thank You
Editor's Note: Patient Worthy is honored to share the following story from our friends at Elephants & Tea, originally written by Michelle Lawrence, a patient living with Chronic Lymphocytic Leukemia…
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The Weight of Thank You
Perpetually Healing
Editor's Note: Patient Worthy is proud to share the following story from our friends at Elephants & Tea, originally written by Dillon Groover, a brain cancer survivor. To see the…
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Perpetually Healing
One Mom’s Fight to Change the Language Around Microvillus Inclusion Disease (MVID)
Editor's Note: Patient Worthy is honored to share this article from our friends at Rareative. To see the article in its original format, please click here. When Jen brought Callie…
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One Mom’s Fight to Change the Language Around Microvillus Inclusion Disease (MVID)
A Routine Colonoscopy at 44 Revealed Cancer – Now She’s Raising Awareness
I thought I wanted a second baby. My son was an adult, and despite having an adorable Frenchie, I was ready to take steps to get to the baby smell.…
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A Routine Colonoscopy at 44 Revealed Cancer – Now She’s Raising Awareness
Boundaries, Securities, and Safety: The Unexpected Challenges of Kevin’s PKU Advocacy
15 years ago I released my first PKU project. I never imagined the day would come when I would need to assert my boundaries this firmly. As I write this,…
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Boundaries, Securities, and Safety: The Unexpected Challenges of Kevin’s PKU Advocacy
The Willem Family’s Medical Challenges
For most of my life, I knew something was wrong with my body. I just never had a name for it. When I was around 18, I had what I…
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The Willem Family’s Medical Challenges
Fourteen Years Living With CML
For World CML Day (September 22nd), Nancie Steinberg reflects on living with chronic myeloid leukemia and how a cancer diagnosis ultimately led her from patient to advocate. Fourteen years ago,…
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Fourteen Years Living With CML
First Responder Stunned by Severe Aplastic Anemia Diagnosis: Greg’s Story
Editor's Note: Patient Worthy is honored to share this article from our friends at the Aplastic Anemia and MDS International Foundation. To see the article in its original format, please…
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First Responder Stunned by Severe Aplastic Anemia Diagnosis: Greg’s Story
Creating Inner Space to Reduce Pain and Burnout
I want to share this to give some ideas I have found that help me move through difficult days with more steadiness and self compassion, especially when things are flaring…
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Creating Inner Space to Reduce Pain and Burnout
An Unexpected Diagnosis Changed Everything: Otis’ Journey with Multiple Myeloma
When I was 39 years old, my life changed in an instant. I was a father of two young children, my daughter was six and my son almost six months…
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An Unexpected Diagnosis Changed Everything: Otis’ Journey with Multiple Myeloma
“You’re Stronger Than You Think You Are”
My name is Terri, and I live in the small town of Searcy, Arkansas, where I’ve proudly connected with countless people and their families over the years, especially while working…
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“You’re Stronger Than You Think You Are”
The Thousand-and-Second Word: My Brother’s Life with XLID-98
Editor's Note: This story was originally written and submitted to us by Anthony Clark. "Okay, Michael, hold the ball up to your ear, then throw it! Just like this: ear,…
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The Thousand-and-Second Word: My Brother’s Life with XLID-98
Raising Awareness of Hunter Syndrome: Stephanie’s Caregiver Story
This is my son Nikolai. Nikolai was recently diagnosed with Mucopolysaccharidosis type 2, or "Hunter Syndrome." A rare genetic form of childhood dementia, it's caused by a mutation in the…
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Raising Awareness of Hunter Syndrome: Stephanie’s Caregiver Story
“Lead the Way” with Dustin Chapman
At the age of 18, I was diagnosed with a rare swallowing disorder called Achalasia. At the time of this video, I had undergone several surgeries, procedures, and countless appointments,…
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“Lead the Way” with Dustin Chapman
To Stand Beside Suffering
Editor's Note: We're honored to share the following article from our friends at the Courageous Parents Network. To see this article in its original format, please click here. Parents will…
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To Stand Beside Suffering
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