Editor's Note: Patient Worthy is honored to share this essay from Carrie Ostrea. I have been fortunate to share my rare disease daughter's story for seventeen years. I have shared…
For most of my life, I knew something was wrong with my body. I just never had a name for it. When I was around 18, I had what I…
For new caregivers supporting a parent, partner, or relative at home, the days can turn into an unbroken string of decisions, vigilance, and worry. The caregiving challenges often arrive faster…
Editor's Note: This story was originally written and submitted to us by Anthony Clark. "Okay, Michael, hold the ball up to your ear, then throw it! Just like this: ear,…
This is my son Nikolai. Nikolai was recently diagnosed with Mucopolysaccharidosis type 2, or "Hunter Syndrome." A rare genetic form of childhood dementia, it's caused by a mutation in the…
Editor's Note: We're honored to share the following article from our friends at the Courageous Parents Network. To see this article in its original format, please click here. Parents will…
Editor's Note: Patient Worthy is honored to share this article with you, kindly provided to us by our friends at End Sepsis. To see the article in its original format,…
Editor's Note: This article was shared with us by Jo Kaur. To see it in its original format, please click here. Riaan Singh Digeorge, age 6, of New York…
Editor's Note: We are honored to share this story from our friends at CURE SYNGAP. To see this article in its original format, please click here. Porter is one of Jansen’s…
Editor's Note: This post was written and submitted to us by Jon Scheinman, and originally shared on LinkedIn. To see the article in its original format, please click here. I…
Editor's Note: This article was shared with us by our friends at the AAMDS International Foundation. To see the article in its original format, please click here. “I would like…
Editor's Note: This is part 2 of a 3-part caregiver story, submitted to us by Joan Foster, who was a caregiver for her husband Charles' Chronic Kidney Disease (CKD). To…
Editor's Note: This is part 2 of a 3-part caregiver story, submitted to us by Joan Foster, who was a caregiver for her husband Charles' Chronic Kidney Disease (CKD). To…
Editor's Note: Patient Worthy is honored to share this story, originally written by Anne and Jerry van Wyk, and shared with us by our friends at the Brighter Hope Foundation.…
Every day, parents just like me sit in doctors’ offices searching for answers. They know something isn’t quite right. Maybe their child isn’t meeting milestones. Maybe their development has stalled,…
Editor's Note: This is part 1 of a 3-part caregiver story, submitted to us by Joan Foster, who was a caregiver for her husband Charles' Chronic Kidney Disease (CKD). Hold…
Editor's Note: This article was shared with us by our friends at the Courageous Parents Network. To see the article in its original format, please click here. My older sister…
Editor's Note: This story was submitted to us by Angelina Olivera, the mom of a 14-year-old with Duchenne muscular dystrophy, and the sister of two brothers who died from Duchenne…
Editor's Note: This article was submitted to us by Regina Portnoy. A clinical trial may be remembered for a breakthrough treatment, a new therapy, or a headline-making discovery. But its…
Editor's Note: This article was originally written by Joanne Huff, and shared with us by our friends at the Courageous Parents Network. To see the article in its original format,…
Editor's Note: Patient Worthy is honored to present this story by Heather Doyle, originally published by the United Porphyrias Association. To see the article in its original format, please click…
Editor's Note: Patient Worthy is honored to share this article from our friends at the Brighter Hope Foundation. To see the article in its original format, please click here. Sir’Savion…
Editor's Note: Patient Worthy is honored to share this article from our friend Jessica Lynn. To see the article in its original format, please click here. When five-year-old Bennett hit…
Editor's Note: Patient Worthy is honored to share this submission by Regina Portnoy, a clinical researcher with 20 years of experience working alongside patients. Many years ago, when I was…
Fight. I don’t think that those who aren’t in the Huntington’s Disease community understand what the word FIGHT truly means to those of us inside the community. We fight for…
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