Editor's Note: This article was written and submitted to us by Pamela Mason, Patient Speaker & Advocate. Sometimes, the hardest part of a medical appointment begins days before I walk…
Editor's Note: This article was written and submitted to us by Victoria Barghout, CEO and Founder Viver Health. Sixteen years ago, I was diagnosed with breast cancer the day before…
Editor's Note: This article was written by Wayne Eskridge, founder of the Fatty Liver Foundation. When we are diagnosed with F4 MASH (cirrhosis) we are often told that it is…
Editor's Note: This story was submitted to Patient Worthy by Roger Templeman, Executive Director of Stabilize Revitalize Fort Pierce (SRFP), a grassroots nonprofit in Fort Pierce, Florida. Last year in…
My name is Jonathan Eskenas and I live in Los Angeles with my wife and our dogs. I'm an executive producer of television series and movies with dozens of credits,…
My name is Sami Yusuf Baker. I am 19 years old, and I live in a small village in the Kurdistan Region of Iraq. I was born with ichthyosis, a…
My name is Rim Wafaa Bendjaada. I am 22 years old, a rare disease and pulmonary hypertension advocate from Algeria, living with pulmonary veno-occlusive disease (PVOD), a rare and complex…
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…
Editor's Note: The following article was originally written and shared with us by Adriana Olivo, NP, Memorial Sloan Kettering Cancer Center. For many people with hormone receptor-positive (HR+), early-stage breast…
Editor's Note: The following story was originally written and shared with us by Holly M. LaPrade. Thirty years ago, a small army of doctors cautiously presented me with a sheet…
Patient by Diagnosis. Founder by Decision. By Camden Hill, Founder & CEO of Areluno Health I was 20 years old when my body started quitting on me. At first, I…
Editor's Note: This article, reprinted in full, was originally written and shared with us by Alliance. To see the article in its original format, please click here. The Alliance for…
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…
So, Parkinson's Disease (PD) vs Functional Neurologic Disorder (FND) seem to join the other medical acronyms. What do these medical acronyms stand for? We have COPD for Chronic Obstructive Pulmonary…
My journey with inclusion body myositis (IBM) has taught me that even when life takes an unexpected turn, hope, faith, determination, and the support of others can make an extraordinary…
Cancelleri’s son, Levi, was diagnosed with Alexander disease as a baby. Above, he smiles widely, wearing the shirt his dad made. Photo courtesy of Tom Cancelleri Editor's Note: Patient Worthy…
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. …
Nota del editor: Para Patient Worthy es un honor compartir este artículo, que nos fue enviado originalmente por Andrés Contreras. La colangitis biliar primaria (PBC) es una enfermedad crónica del…
Editor's Note: Patient Worthy is honored to share this article, originally submitted to us by Andres Contreras. Primary biliary cholangitis (PBC) is a long-term liver disease in which the immune…
Editor's Note: Patient Worthy is honored to bring you this article, shared with us by our friends at Rareatives. Originally written by Davi Jacobs, the article can be found in…
Diagnosis and year of diagnosis I was diagnosed with epilepsy in 2000, and I have been living with epilepsy for more than 26 years. My journey has included countless seizures,…
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…
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