Editor's Note: The following is an excerpt from Bird’s Eye View: Stories of a Life Lived in Health Care by Sue Robins. I remember every single act of kindness I’ve encountered…
All genetic testing we did for Jay during pregnancy came back normal (though we did the bare minimum). When he was born, he struggled to breathe and was diagnosed with…
Editor's Note: This story was shared with Patient Worthy by our friends at Elephants & Tea. The article, originally written by Kimberly Oliver, can be found in its original format…
Editor's Note: This story was originally written by Anne Denneen, and shared on Caring Bridge. So many things happen in life that you don’t even register them at the time. …
Sixteen years ago, when my daughter was diagnosed with a rare autoimmune disease, I knew I was scared. I knew I was overwhelmed. I knew I was stressed. What I…
At just two years old, Asher is already teaching us that the smallest milestones can be the biggest victories. Our son, Asher, was born on February 10, 2024. He's a…
When there is no treatment for your child's rare disease, how do you find a way forward? For one mother in the Czech Republic, the answer was to start asking…
Editor's Note: Patient Worthy is honored to present this story, originally written by Blyth Lord, founder of Courageous Parents Network. I was asked earlier this week by a high school…
Editor's Note: Patient Worthy is honored to share this story from our friends at Elephants & Tea. To see the article, originally written by Natalia Collings, in its original format,…
Editor's Note: Patient Worthy is honored to share the following caregiver story, submitted to us by Jon Scheinman of The Epilepsy Foundation. To see the article in its original format,…
Editor's Note: Patient Worthy is honored to present this story, shared with us by our friends at the Courageous Parents Network. Originally written by Dr. Adebimpe Adewusi, the article can…
Editor's Note: Patient Worthy is honored to share this article from our friends at Rareative. To see the article in its original format, please click here. When Jen brought Callie…
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…
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