Tessa’s Journey with Acromegaly
Hi! My name is Tessa, and I have a rare disease called Acromegaly. My journey started in 2015 when we discovered I had a 9x10x12 tumor growing on my pituitary…
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Tessa’s Journey with Acromegaly
We Will Never Ring the Bell – My Myelofibrosis Story
Editor's Note: The above photograph is credited to Patient Voice. “Ringing the bell” is an enduring image associated with cancer survivorship. It represents victory, celebration and the end of treatment.…
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We Will Never Ring the Bell – My Myelofibrosis Story
What Functional Medicine and Holistic Care Taught Me About Healing Graves and TED
Editor’s Note: Patient Worthy is honored to share part 6 of 10 of Elena Genik’s series of blog posts detailing her journey with Graves disease and thyroid eye disease. The Turning Point There…
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What Functional Medicine and Holistic Care Taught Me About Healing Graves and TED
When Two Rare Diseases Collide: What My Son Taught Me About Immune System Complexity
When my son was eight months old, he had already been hospitalized more times than I can count for infections that seemed far too severe for a baby. Ear infections,…
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When Two Rare Diseases Collide: What My Son Taught Me About Immune System Complexity
Rock Bottom in Mexico: The Thyroid Eye Disease Flare That Forced Me to Rebuild My Health
Editor's Note: Patient Worthy is proud to share part 7 of 10 of Elena Genik's blog series, detailing her experiences with Graves disease and thyroid eye disease. The Perfect Storm…
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Rock Bottom in Mexico: The Thyroid Eye Disease Flare That Forced Me to Rebuild My Health
The Emotional Toll of Thyroid Eye Disease: What Patients Are Not Told
Editor's Note: Patient Worthy is honored to share part 6 of 10 of Elena Genik's series of blog posts detailing her journey with Graves disease and thyroid eye disease. The…
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The Emotional Toll of Thyroid Eye Disease: What Patients Are Not Told
When “Normal Labs” Are Not Normal: What Thyroid Patients Need to Know
Editor's Note: Patient Worthy is pleased to share part 5 of 10 in an ongoing series of blog posts, provided to us by Elena Genik. The Disconnect Between Numbers and…
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When “Normal Labs” Are Not Normal: What Thyroid Patients Need to Know
Medical Gaslighting Is Real: The Appointment That Changed Everything
Editor's Note: We're honored to share part 4 of 10 of an ongoing blog series, originally written by Elena Genik. When You Go to a Specialist Expecting Help There is…
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Medical Gaslighting Is Real: The Appointment That Changed Everything
James’ Story: Navigating Life with Myelofibrosis
Editor's Note: Patient Worthy is honored to share this patient story, provided to us by our friends at Heal Canada, and originally written for the National Post. James, 73, is…
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James’ Story: Navigating Life with Myelofibrosis
The Invisible Battle No One Warned Me About: Developing Thyroid Eye Disease
Editor’s Note: Patient Worthy is honored to share part 3 in an ongoing 10-part series, written and shared with us by Elena Genik. When My Eyes Began Changing My TED…
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The Invisible Battle No One Warned Me About: Developing Thyroid Eye Disease
When Healing Goes Wrong: How I Accidentally Triggered My Graves Disease
Editor's Note: Patient Worthy is honored to share part 2 in an ongoing 10-part series, written and shared with us by Elena Genik. Before the Diagnosis For years, I felt…
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When Healing Goes Wrong: How I Accidentally Triggered My Graves Disease
A 20-Year Journey Through Prostate Cancer, Recurrence, and Modern ADT: A Patient’s Perspective on What Clinicians Need to Know
Twenty years is a long time to believe a cancer chapter has closed. For two decades after my radical prostatectomy, I lived with the quiet confidence of someone who had…
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A 20-Year Journey Through Prostate Cancer, Recurrence, and Modern ADT: A Patient’s Perspective on What Clinicians Need to Know
Forged in Fire: My Journey with Biliary Atresia from 115 Pounds to a Life of Purpose
To the patient, the parent, the caregiver, and the person in the "limbo" of waiting: I am one of you. My name is Aaron Jackson, and this is my story.…
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Forged in Fire: My Journey with Biliary Atresia from 115 Pounds to a Life of Purpose
Choosing Joy: Erika’s Journey of Raising a Child with Dravet Syndrome, a Rare Form of Epilepsy
In the whirlwind of early motherhood, days blur together in a haze of feedings, diaper changes, and sleepless nights. You’re learning your baby’s every sound, every expression, and trying to…
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Choosing Joy: Erika’s Journey of Raising a Child with Dravet Syndrome, a Rare Form of Epilepsy
Why Palliative Care Shouldn’t Wait: A Nurse and Mother’s Story
Editor's Note: Patient Worthy is proud to share this story from the Courageous Parents Network, originally written by Kelsey Stanczyk. When I first became a nurse, I worked in an…
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Why Palliative Care Shouldn’t Wait: A Nurse and Mother’s Story
Nick and Rene’s Caregiver Story for Their Daughter with Cystic Fibrosis
I’ve learned something brutal over the last few weeks: Most people cannot tolerate the reality of a child nearly dying. So they dilute it. They soften it. They reach for…
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Nick and Rene’s Caregiver Story for Their Daughter with Cystic Fibrosis
“The Aftermath: Nobody Told Me This Part Would Hurt Too: – Megan’s Fight Against Non-Hodgkin’s Lymphoma
Editor's Note: Patient Worthy is proud to share this story from our friends at Elephants & Tea. To see the story in its original format, please click here. “Well, good…
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“The Aftermath: Nobody Told Me This Part Would Hurt Too: – Megan’s Fight Against Non-Hodgkin’s Lymphoma
Our Achondroplasia Journey: What I Wish I’d Known When My Daughter Was Diagnosed
Editor's Note: Patient Worthy is proud to share this caregiver story submitted to us by Missy Williams. Nine years later, I can still picture the moment I received the news…
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Our Achondroplasia Journey: What I Wish I’d Known When My Daughter Was Diagnosed
A Conversation About Survivorship
Editor's Note: Patient Worthy is proud to share this article, originally written by Katie Tat, from our friends at Elephants & Tea. To see the article in its original format,…
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A Conversation About Survivorship
It Was All a Dream
Editor's Note: Patient Worthy is honored to share Michelle Patidar's patient story, provided to us by our friends at Elephants & Tea. To see the article in its original format,…
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It Was All a Dream
Living with gMG: Lessons from William, a Nurse and Patient
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…
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Living with gMG: Lessons from William, a Nurse and Patient
My Journey With MASH
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…
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My Journey With MASH
Turning Painful Scars into Guiding Stars: Beverly’s Journey with 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…
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Turning Painful Scars into Guiding Stars: Beverly’s Journey with Dystonia
Raspberry Sorbet Swirls in the Sky
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…
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Raspberry Sorbet Swirls in the Sky
An Unexpected Liver Transplant Part 4 – The Journey to Disney World
“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…
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An Unexpected Liver Transplant Part 4 – The Journey to Disney World
