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5 Lessons Nature Taught Me About Living with Pain and Dystonia

5 Lessons Nature Taught Me About Living with Pain and Dystonia

  • Post author:Tom Seaman
  • Post published:April 22, 2026
  • Post category:Cervical 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

What We Carry With Us: The Lesson of the Quilt

  • Post author:Patient Worthy Contributor
  • Post published:April 22, 2026
  • Post category:Lymphoma

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?

What Happens When a Patient Is Living with Multiple Rare Diseases?

  • Post author:Patient Worthy Contributor
  • Post published:April 12, 2026
  • Post category:Rare Disease

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

Can We Fix This Broken Heart? – Part 5

  • Post author:Patient Worthy Contributor
  • Post published:April 10, 2026
  • Post category:Congestive Heart Failure

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

Can We Fix This Broken Heart? – Part 4

  • Post author:Patient Worthy Contributor
  • Post published:April 9, 2026
  • Post category:Congestive Heart Failure

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

Can We Fix This Broken Heart? – Part 3

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

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

Can We Fix This Broken Heart? – Part 2

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

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

Can We Fix This Broken Heart? – Part 1

  • Post author:Patient Worthy Contributor
  • Post published:April 6, 2026
  • Post category:Rare Disease

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

Ron’s Fight Against Amyloidosis

  • Post author:Patient Worthy Contributor
  • Post published:April 3, 2026
  • Post category: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

The Sun Sucks, But You Do Not

  • Post author:Patient Worthy Contributor
  • Post published:April 2, 2026
  • Post category:Erythropoietic Protoporphyria

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

Rachel’s DVT and Pulmonary Embolism Experience

  • Post author:Patient Worthy Contributor
  • Post published:April 2, 2026
  • Post category:Pulmonary Embolism

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

The Mentor She Wished She Had – How Elizabeth Became a Lifeline for EB Families

  • Post author:Bree Clare
  • Post published:April 1, 2026
  • Post category:Epidermolysis Bullosa

 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
How to Build a Lasting Legacy While Living with Chronic Illness
source: shutterstock.com

How to Build a Lasting Legacy While Living with Chronic Illness

  • Post author:Patient Worthy Contributor
  • Post published:April 1, 2026
  • Post category:Rare Disease

Patients living with chronic or rare diseases and the caregivers coordinating appointments, medications, and daily life often carry a quiet question alongside the medical work: what will last beyond the…

Continue Reading How to Build a Lasting Legacy While Living with Chronic Illness
Finding My Way Forward: Living with Multiple Myeloma

Finding My Way Forward: Living with Multiple Myeloma

  • Post author:Patient Worthy Contributor
  • Post published:March 31, 2026
  • Post category:Multiple Myeloma

I used to be really active: swimming, Tai Chi every week, practicing yoga. So, when I first felt persistent rib and back pain in late 2023, I assumed it was…

Continue Reading Finding My Way Forward: Living with Multiple Myeloma
Choosing to Be Me: Redefining My Life with Rheumatic Heart Disease

Choosing to Be Me: Redefining My Life with Rheumatic Heart Disease

  • Post author:Patient Worthy Contributor
  • Post published:March 30, 2026
  • Post category:Heart disease

My diagnosis of rheumatic heart disease came on suddenly. I remember being 12, sitting at the doctor’s office, and was told that I have a heart murmur. At the time,…

Continue Reading Choosing to Be Me: Redefining My Life with Rheumatic Heart Disease
Heather and Nathan’s Journey with Huntington’s Disease

Heather and Nathan’s Journey with Huntington’s Disease

  • Post author:Patient Worthy Contributor
  • Post published:March 28, 2026
  • Post category:Huntington's disease

Fight. I don’t think that those who aren’t in the Huntington’s Disease community understand what the word FIGHT truly means to those of us inside the community. We fight for…

Continue Reading Heather and Nathan’s Journey with Huntington’s Disease
My Journey with Ehlers-Danlos Syndrome

My Journey with Ehlers-Danlos Syndrome

  • Post author:Patient Worthy Contributor
  • Post published:March 27, 2026
  • Post category:Ehlers-Danlos Syndrome

My name is Amanda. I was diagnosed with a genetic connective tissue disease called Hypermobile Ehlers-Danlos Syndrome (h-EDS) about four years ago. However, the diagnosis was a decade in the…

Continue Reading My Journey with Ehlers-Danlos Syndrome
Faye’s Journey with Amyloidosis

Faye’s Journey with Amyloidosis

  • Post author:Patient Worthy Contributor
  • Post published:March 27, 2026
  • Post category:Amyloidosis

My name is Faye. I’m blessed to be the wife of the love of my life, Brad, and the proud mom of two extraordinary boys we adopted in 2013—now teenagers…

Continue Reading Faye’s Journey with Amyloidosis
Opinion Piece: Insurance Abuse

Opinion Piece: Insurance Abuse

  • Post author:Patient Worthy Contributor
  • Post published:March 26, 2026
  • Post category:Ehlers-Danlos Syndrome

Editor's Note: The views, thoughts, and opinions expressed in this article belong solely to the author and do not necessarily reflect the position of Patient worthy or any affiliated organization,…

Continue Reading Opinion Piece: Insurance Abuse
The Luck of the Irish: A Parable of Inheritance, Illness, and Hope

The Luck of the Irish: A Parable of Inheritance, Illness, and Hope

  • Post author:Patient Worthy Contributor
  • Post published:March 25, 2026
  • Post category:Renal cancer

Editor's Note: The following article was originally written by Kelly Curtin-Hallinan, and shared with us by our friends at Elephants & Tea. This past St. Patrick’s Day my daughter and…

Continue Reading The Luck of the Irish: A Parable of Inheritance, Illness, and Hope
An Excerpt from “A Ribbon for Your Hair”

An Excerpt from “A Ribbon for Your Hair”

  • Post author:Patient Worthy Contributor
  • Post published:March 24, 2026
  • Post category:Niemann-Pick Type C Disease

Editor's Note: The following in from author Stephen Policoff, whose book A Ribbon for Your Hair is out today! Introduction When Stephen Policoff’s adopted daughter Anna was four, a freak…

Continue Reading An Excerpt from “A Ribbon for Your Hair”
A Small Taste of Freedom in an Unfree World

A Small Taste of Freedom in an Unfree World

  • Post author:Patient Worthy Contributor
  • Post published:March 21, 2026
  • Post category:Rare Disease

“Do not go gentle into that good night. Rage, rage against the dying of the light.” --Dylan Thomas One may have thought, after six months under constant supervision in a…

Continue Reading A Small Taste of Freedom in an Unfree World
My Journey, My Life, My Story, My Book – Carry’s Experiences with “Fish Odor Syndrome”

My Journey, My Life, My Story, My Book – Carry’s Experiences with “Fish Odor Syndrome”

  • Post author:Patient Worthy Contributor
  • Post published:March 18, 2026
  • Post category:Trimethylaminuria

You can not see, hear, or touch my rare condition. I STINK! (LITERALLY) I wasn’t sure if I was going to tell my story. But I cannot forget a seventeen-year-old…

Continue Reading My Journey, My Life, My Story, My Book – Carry’s Experiences with “Fish Odor Syndrome”
Skipping A Colonoscopy Almost Cost Me Everything

Skipping A Colonoscopy Almost Cost Me Everything

  • Post author:Patient Worthy Contributor
  • Post published:March 17, 2026
  • Post category:Colorectal cancer

Editor's Note: Patient Worthy is proud and honored to share Jennifer's story with cystic fibrosis and colon cancer, originally published on the Cystic Fibrosis Research Institute's website. It started like…

Continue Reading Skipping A Colonoscopy Almost Cost Me Everything
James’ Story: Navigating Life With Myelofibrosis

James’ Story: Navigating Life With Myelofibrosis

  • Post author:Patient Worthy Contributor
  • Post published:March 5, 2026
  • Post category:Myelofibrosis

Editor's Note: This article was shared with us by our friends at Heal Canada. To see the article in its original format, please click here. James, 73, is a partner…

Continue Reading James’ Story: Navigating Life With Myelofibrosis
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The Mentor She Wished She Had - How Elizabeth Became a Lifeline for EB
Finding Strength Together: Scott and Katie’s Journey with Advanced Kidney
You Are Not Alone: Empowering the Advanced Kidney Cancer Community
Finding Light Through Story-The Power of Ambassadorship in the Endometrial Cancer Community
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