Patient Worthy is honored to present this story by way of the GACI Global. GACI Global is a nonprofit organization whose mission is to connect families affected by Generalized Arterial…
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 grateful to present this story written by Bud Hager by way of the Courageous Parents Network. CPN is a nonprofit organization that has oriented, equipped and empowered…
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…
This article is written by Enrico Orzes and originally published on Osservatorio Malattie Rare (OMaR). It has been translated from Italian. Patient Worthy is grateful to the team at OMaR…
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…
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. Since I…
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…
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…
Most things in life don’t always go as expected. None of us ever truly prepares for a hardship that throws our life off course. Even in the case of a…
Eighty-five-year-old Frank Meuers considers his 500th immunoglobulin infusion to be a cause for celebration. Frank has logged details of his doctor’s visits since his first dose of replacement therapy with…
Acknowledgment: This patient story is sponsored by Ipsen Biopharmaceuticals, Inc. and is promoted through the Patient Worthy Collaborative Content program. We only publish content that embodies our mission of providing…
Jean's life story is one of extraordinary resilience, a testament to the strength of the human spirit in the face of rare and challenging medical conditions. Born in 1943 in…
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…
Fredericksburg, Virginia resident Johnny Boatman is a former national guardsman who had been in excellent physical condition all his life. That was until 2022 when he felt a sharp pain…
Crystal first started noticing abscesses on her skin around age 11, and was officially diagnosed with Hidradenitis Suppurativa (HS) at age 13. HS is a chronic, inflammatory skin condition that…
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…
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…
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…
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.…
Mia was diagnosed with Osteosarcoma in 2018 and was told she was incurable in 2022. Since her diagnosis, Mia has worked with MIB Agents and launched the osTEAo podcast alongside…
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…
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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