Cailyn’s Stomach Cancer Journey
Editor's Note: Patient Worthy is proud to share this story from our friends at No Stomach for Cancer. To see the article in its original form, please click here. In…
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Cailyn’s Stomach Cancer Journey
SilvaStrong: Unveiling the Unexpected
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.…
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SilvaStrong: Unveiling the Unexpected
Cathy the Lupus and ITP Warrior
Editor's Note: This article was shared with Patient Worthy by our friends at PDSA.org. To see the article in its original format, please click here. I had heard of lupus…
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Cathy the Lupus and ITP Warrior
Cancer: It Sucks at Any Age
Acknowledgement: Patient Worthy is proud to share this article from our friends at Elephants & Tea. To see the article in its original form, please click here. I wish someone…
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Cancer: It Sucks at Any Age
The Gift of Anticipatory Guidance: What Every Family Deserves
Editor's Note: Patient Worthy is proud to share this caregiver story from our friends at Courageous Parents. — A parent’s perspective by Maria Hopfgarten, Courageous Parent Network Parent Champion. When…
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The Gift of Anticipatory Guidance: What Every Family Deserves
Fighting for Dom: A Mother’s Journey Through Rare Disease
When you become a parent, your life changes in an instant. You’re no longer just living for yourself—you’re living for your child. A fierce and unwavering instinct takes over, a…
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Fighting for Dom: A Mother’s Journey Through Rare Disease
From Ballet Studios to Research Clinics: Page’s Journey with Narcolepsy
I was diagnosed with Type-1 narcolepsy when I was 20 years old. At the time, I was living in Germany, dancing as a professional ballet dancer in an opera house.…
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From Ballet Studios to Research Clinics: Page’s Journey with Narcolepsy
Urban’s Life with SATB2-Associated Syndrome
Acknowledgement: Patient Worthy is honored to share this story by Erika Stariha, Co-Founder and President of SATB2 Europe. This is Urban, my teenage firstborn. He is joyful. Curious. Full of…
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Urban’s Life with SATB2-Associated Syndrome
Breaking the Cycle: A Family’s Journey Through Polycystic Kidney Disease
Editor's Note: Patient Worthy is honored to share this patient story, which comes to us from our partners at PKD-Free Alliance. Polycystic kidney disease (PKD) has been part of my…
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Breaking the Cycle: A Family’s Journey Through Polycystic Kidney Disease
Living Through the Unexpected: My Ongoing Journey with Cervical Cancer
Editor's Note: This story was originally authored by Natalie H., a cancer survivor and loving mother of two. They say cancer changes everything. I’ve learned it doesn’t just change you,…
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Living Through the Unexpected: My Ongoing Journey with Cervical Cancer
An interview with Johnny’s Mom: A Dravet Syndrome Family Life
Danielle’s baby boy had a long and terrifying seizure on the 4th of July six years ago. The family was at her mother’s home. Both Danielle and her mother are…
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An interview with Johnny’s Mom: A Dravet Syndrome Family Life
Living with Familial Chylomicronemia Syndrome
I live with a rare, genetic disease called familial chylomicronemia syndrome, or FCS, which prevents my body from breaking down fats and removing triglycerides from my bloodstream. FCS is inherited…
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Living with Familial Chylomicronemia Syndrome
Alyssa’s Story with Generalized Pustular Psoriasis
“I have to be dying”, I said earnestly to my husband for the second time that year, “at the very least, I don’t think there is much more pain I…
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Alyssa’s Story with Generalized Pustular Psoriasis
From Pharma Rep to Patient Advocate: My Journey with Neuroendocrine Cancer
My name is Kelly Baughman, and I grew up in a small town in Louisiana—tight-knit, faith-driven, and yes, I went to church and summer camp with the Duck Dynasty family.…
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From Pharma Rep to Patient Advocate: My Journey with Neuroendocrine Cancer
Turning Pain into Purpose: Our Story
I often find myself initially stuck on where to start when telling our story. I say “our” because that’s the truth of this rare disease journey: everyone who touches Natalie’s…
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Turning Pain into Purpose: Our Story
Beyond Reason
Patient Worthy is grateful to our partner Elephants & Tea for providing the following article by Laura DeKraker Lang-Ree, a cancer caregiver to her daughter Cecilia who survived childhood leukemia.…
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Beyond Reason
Dancing Through the Rain with Cancer
Patient Worthy is grateful to our partner Elephants & Tea for providing the following article by Brittany Wilson, a stage 3A Melanoma, R-ISS stage 2 IgG Lambda Myeloma patient and…
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Dancing Through the Rain with Cancer
Sebastien Recalls His Mother’s Breast Cancer Journey – Part 3
Editor’s Note: This is the third and final part of a caregiver story-share. To read part one, click here. For part two, click here. These moments of light, these tiny…
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Sebastien Recalls His Mother’s Breast Cancer Journey – Part 3
The Strength of a Single Mother: Dominique’s Breast Cancer Story
Written When Diagnosed On January 15th, 2024 my life changed forever. I felt my right breast turn completely solid. I knew something wasn’t right, so I went to my doctor.…
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The Strength of a Single Mother: Dominique’s Breast Cancer Story
Sebastien Recalls His Mother’s Breast Cancer Journey – Part 2
Editor’s Note: This is the second part of an ongoing story. The third and final part will be published Tuesday, June 25th. To read part one, click here. The initial…
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Sebastien Recalls His Mother’s Breast Cancer Journey – Part 2
Waldenstrom’s Macroglobulinemia & Advocacy: Steven’s Story
In 2019 I presented with dark purple spots on my legs, and my neurologist decided to do lab work. My labs showed a high IGM level, so I was then…
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Waldenstrom’s Macroglobulinemia & Advocacy: Steven’s Story
Caroline Menzia’s Caregiver Story with FOXG1 Syndrome
Disclaimer: The views and opinions expressed in this article are those of the author and do not necessarily reflect the official policy or position of Patient Worthy. At just 5…
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Caroline Menzia’s Caregiver Story with FOXG1 Syndrome
Sebastien Recalls His Mother’s Breast Cancer Journey – Part 1
Editor's Note: This is the first part of an ongoing story. The second part will be published Tuesday, June 17th. The fluorescent lights of the hospital room hummed, a stark…
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Sebastien Recalls His Mother’s Breast Cancer Journey – Part 1
Noah’s PPA2-Deficiency and Kathleen’s Caregiver Journey
Three hundred and ten: The number of days we had prior to our lives forever changing. On April 13, 2022, it was a day like any other. My husband and…
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Noah’s PPA2-Deficiency and Kathleen’s Caregiver Journey
Danny Gereg Shares His Bladder Cancer Story
We're honored to bring you this video, shared with us by Danny Gereg, that details some of his journey living with bladder cancer. Danny has stayed resilient and positive, finding…
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Danny Gereg Shares His Bladder Cancer Story
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