For Bubba 7/31/1997 - 7/22/2018 How do you love a child you know will die young? You love recklessly, with abandon. You don’t mean to - but you can’t stop…
A little background on me, my name is Gene Pohancsek and I was born and raised in western New York. I am married and have two daughters. They keep my…
Patient Worthy is honored to provide this story written by Shannon Wieloch by way of Stork Genetics. Stork Genetics is an organization that offers telehealth genetic counseling for adult, proactive,…
I've spent much of my life as an amateur athlete—competing in club sports, marathons, triathlons, and century rides. Staying active isn’t just about my physical health; it’s a core part…
Editor's Note: Patient Worthy is grateful to present this article that was written by and shared with permission from Sue Skavlem, a care partner to her husband who is living with…
Meredith’s Medical Journey Meredith Grace was born full term. During the first few hours of her life, she seemed extremely uncomfortable and would only be content in my arms. After…
When I ask a patient about their family history, I do so to offer the most accurate risk of disease I can for them or their children. So when a…
Healthcare costs in the United States are rising. This is due to many factors, such as inflation, prescription drugs, and behavioral health. The result has been a redefinition of a…
On the day of December 5th ,2023, I had no idea my life would completely change. Today, 10 months later, after a misdiagnosis, multiple hospital visits, countless testing, many specialists…
Part 3 - Our Post-Transplant Journey (the first year) Continued from Part 2 From the nurses and doctors to the therapists and social workers and everybody else involved in Becky’s…
The CDC reports that approximately 17% of parents in the U.S. have a disabled child. These parents not only cope with the stress that accompanies their attempts to provide stability,…
The holidays are a time of fun, family, and for many of us, a time when our chronic health conditions tend to flare up. We don’t mean for that to…
Thinking about the year-end holidays brings up a kaleidoscope of images, and an array of emotions for me. And everyone else too, I imagine. There are the vivid memories of…
By Rachel Whetstone Food is fundamentally linked with celebrations in every culture around the world. Families gather for a feast at big holidays and birthdays that are celebrated with cake…
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…
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.…
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…
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…
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…
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…
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…
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.…
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…
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…
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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