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Holidays with Dystonia
What does it mean to you to be living with a rare disease or chronic illness at this time of year? Over the years, since I was diagnosed I've never…
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Holidays with Dystonia
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What’s the One Genetic Test I Would Recommend to Most People?
This article was written by and shared with permission from Shannon Wieloch, MS. Shannon is a certified genetic counselor and patient advocate for the Aicardi-Goutiere Syndrome Advocacy Association and founder of Stork Genetics.…
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What’s the One Genetic Test I Would Recommend to Most People?
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Disabled Journalists Have to Fight to Get into Newsrooms
In a recent article by Bailey Martens, she describes the struggles she and others have faced being disabled as journalists and brings light to the importance of accessibility in the…
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Disabled Journalists Have to Fight to Get into Newsrooms
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Alexa’s Maple Syrup Urine Disease Patient Story
Written by Faye Amado This is the story of my child who is a brave fighter in her life and continues to fight to survive and be normal as she…
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Alexa’s Maple Syrup Urine Disease Patient Story
Breaking Barriers: Celebrating the Inclusion of Disabled Athletes in the Drive for Diversity
In an exciting and heartwarming shift towards inclusivity, the world of sports is embracing a new era of diversity—one where disabled athletes are not only welcomed but celebrated for their…
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Breaking Barriers: Celebrating the Inclusion of Disabled Athletes in the Drive for Diversity
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Audrey’s Story: Myasthenia Gravis (MG) Does Not Define Me
Written by Audrey Getman September 25, 2020: The day I was diagnosed with myasthenia gravis (MG). One month prior: I was in the emergency room (ER) after experiencing a worsening…
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Audrey’s Story: Myasthenia Gravis (MG) Does Not Define Me
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An Unexpected Liver Transplant – Part Two
Written by Bill Clark Part 2 - Our Journey from Liver Failure to Transplant Continued from Part 1 “A new liver.” That was Becky’s answer pretty much every morning from…
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An Unexpected Liver Transplant – Part Two
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The Value of Genetic Counselors: Why Their Role is Essential in Healthcare
This article was written by and shared with permission from Shannon Wieloch, MS. Shannon is a certified genetic counselor and patient advocate for the Aicardi-Goutiere Syndrome Advocacy Association and founder of Stork Genetics.…
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The Value of Genetic Counselors: Why Their Role is Essential in Healthcare
source: Shriner Children's
Meet Liam, Living with Myelomeningocele
Meet Liam, a 12-year-old patient at Shriners Children’s St. Louis, born with myelomeningocele, a severe form of spina bifida. This condition affects sensation in his legs, leaving him without feeling…
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Meet Liam, Living with Myelomeningocele
source: Heather Shorten
My Story with Pompe Disease
Written by Heather Shorten, Founder, Pompe Alliance On July 15th, 2015, I was diagnosed with Pompe disease after about 3 years of searching for a diagnosis. I know 3 years…
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My Story with Pompe Disease
source: Shriner Children's
Mohammed’s Journey with Spina Bifida
Mohammed was born with spina bifida, a condition in which part of the spine doesn’t develop properly, exposing sections of the spinal cord and nerves. Born in Syria while his…
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Mohammed’s Journey with Spina Bifida
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An Unexpected Liver Transplant – Part One
Written by Bill Clark Part 1 - Our Journey from Fatty Liver to Liver Failure Becky's fight is our fight. That became my "rallying cry” early on when my wife…
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An Unexpected Liver Transplant – Part One
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A Kingdom Rebuilt: Advocacy and Hope After the Loss of My Son to GRIN Disorder (GRIN1)
Written by Lauren Williams On August 4, 2023, I contributed an article to Patient Worthy about how I transformed my mindset from “Why me?” to “Why not me?” following my…
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A Kingdom Rebuilt: Advocacy and Hope After the Loss of My Son to GRIN Disorder (GRIN1)
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The Importance of Staying Active with Pompe Disease
Written by Vanessa O'Connell Hello, my name is Vanessa, and I am living with late onset Pompe disease, also known as glycogen storage disease type II and acid maltase deficiency.…
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The Importance of Staying Active with Pompe Disease
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Even as a Nurse, I Wasn’t Prepared for Life with Early Alzheimer’s Disease
Written by Linda Shows Let me start with, I’m BLESSED even though I have Alzheimer’s disease (AD). I am a blessed wife, mother, daughter, sister, friend, dog mom, nurse and…
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Even as a Nurse, I Wasn’t Prepared for Life with Early Alzheimer’s Disease
source: Chuck Howe
Confronting Duchenne Muscular Dystrophy as a Family
Written by Chuck Howe Nothing in life gives me greater joy than seeing my grandchildren be happy and thrive. You can imagine the heartbreak and fear I experienced when I…
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Confronting Duchenne Muscular Dystrophy as a Family
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The Ripple Effect of My Colorectal Cancer Journey: How One Small Moment Can Change Your Life
Written by Yla Flores Have you ever experienced a seemingly small moment that ended up changing your life forever? Whether it’s turning left instead of right, going out one night…
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The Ripple Effect of My Colorectal Cancer Journey: How One Small Moment Can Change Your Life
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Reflections of a PKU Advocate
Written by Kevin Alexander, Storyteller, Musician, PKU Advocate, Podcaster “I’m not trying to live a ‘normal’ life. Normal is overrated. I’m trying to live my life.” I had that…
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Reflections of a PKU Advocate
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When Might You Consider Genetic Testing for Alzheimer’s Disease?
This article was written by and shared with permission from Shannon Wieloch, MS. Shannon is a certified genetic counselor and patient advocate for the Aicardi-Goutiere Syndrome Advocacy Association and founder of Stork Genetics.…
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When Might You Consider Genetic Testing for Alzheimer’s Disease?
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Natalie’s Legacy: Saving Other Families from Aortic Dissection Loss Due to Undiagnosed VEDS
This patient story was contributed by the Marfan Foundation. ### CONTENT WARNING: This patient story focuses on a detailed account of fatal childhood aortic dissection. It is shared to save…
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Natalie’s Legacy: Saving Other Families from Aortic Dissection Loss Due to Undiagnosed VEDS
Jennifer’s Story: More than a WHIM – Important Lessons from My Diagnostic Journey
Written by Jennifer, a patient living with WHIM syndrome. ### I’m in my sixties - but it wasn’t until a decade ago that I learned the name of the rare…
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Jennifer’s Story: More than a WHIM – Important Lessons from My Diagnostic Journey
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Caleb’s Story: Having Eczema and Sensitive Skin Throughout My Youth
Written by Caleb Browning This story was originally published for MySkinMyStory.org, a website offering young people living with severe atopic dermatitis — also known as eczema — and other skin…
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Caleb’s Story: Having Eczema and Sensitive Skin Throughout My Youth
Virág’s Ehlers-Danlos Syndrome (EDS) Story
Written by Virág Hazai, an Ehlers-Danlos Syndrome patient advocate living in Hungary. ### My name is Virág, and I'm a university student with Ehlers-Danlos syndrome (EDS). I would love to…
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Virág’s Ehlers-Danlos Syndrome (EDS) Story
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Aicardi-Goutières Syndrome: What You Legit NEED to Know
This article was written by and shared with permission from Shannon Wieloch, MS. Shannon is a certified genetic counselor and patient advocate for the Aicardi-Goutiere Syndrome Advocacy Association and founder…
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Aicardi-Goutières Syndrome: What You Legit NEED to Know
Patient Worthy Joins Health Awareness 2024 Q3 Rare Disease Campaign
Patient Worthy is proud to announce its participation in Health Awareness' 2024 Q3 Rare Disease campaign. Health Awareness, which publishes healthcare news, information and personal insight stories for readers in…
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Patient Worthy Joins Health Awareness 2024 Q3 Rare Disease Campaign
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