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…
Written by Yla Flores Have you ever experienced a seemingly small moment that ended up changing your life forever? Whether it’s turning left instead of right, going out one night…
Colleen's remarkable journey with metastatic melanoma serves as a powerful testament to the resilience of the human spirit. Diagnosed in April 2016 with stage IV metastatic melanoma, her determination and…
Written by Kevin Alexander, Storyteller, Musician, PKU Advocate, Podcaster “I’m not trying to live a ‘normal’ life. Normal is overrated. I’m trying to live my life.” I had that…
Almost 100,000 people in the United States have been diagnosed with sickle cell disease (SCD). About one million people worldwide have the disease. Patients are at risk of death in…
This patient story was contributed by the Marfan Foundation. ### CONTENT WARNING: This patient story focuses on a detailed account of fatal childhood aortic dissection. It is shared to save…
Written by Jennifer, a patient living with WHIM syndrome. ### I’m in my sixties - but it wasn’t until a decade ago that I learned the name of the rare…
Written by Caleb Browning This story was originally published for MySkinMyStory.org, a website offering young people living with severe atopic dermatitis — also known as eczema — and other skin…
Written by Virág Hazai, an Ehlers-Danlos Syndrome patient advocate living in Hungary. ### My name is Virág, and I'm a university student with Ehlers-Danlos syndrome (EDS). I would love to…
Jenny, a 40-year-old nurse with Charcot-Marie-Tooth disease, began her solo voyage from Hawaii with her 6-pound Maltese dog named Romeo aboard in April 2023. She arrived in Fiji on or…
By: Erin Santos-Primis, Mom to Isabella and Executive Director of the Isabella Santos Foundation Starting a nonprofit in honor of a loved one lost to a tragic disease is often…
As I reflect on over 20 years living with dystonia and pain and other symptoms that changed my life in many ways, I want to share some of the things…
Ruby Carr has always loved playing outside. But an enjoyable day in the summer sun turned into chaos after Ruby was unknowingly bitten by a tick. As the tick latched…
Yusara Ahmed was prepared to take action when she learned that her son Yusuf was diagnosed with beta thalassemia, an uncommon blood disorder. Yusara's sister also lived with the disease,…
By Alexis Rodriguez When I was 24 years old, what started as a terrible sinus infection took a turn I never could have expected. I woke up one morning with…
Rare Community Profiles is a Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their families, advocates, scientists, and more.…
Rare Community Profiles is a Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their families, advocates, scientists, and more.…
According to a story from StokeonTrentLive, 34-year-old mother Rachel Potter is living with thousands of tumors thanks to a rare genetic disorder called neurofibromatosis type 1 (NF1). Though they aren't…
Rare Community Profiles is a Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their families, advocates, scientists, and more.…
When he was just three years old, Florida State Seminoles outfielder Jaime Ferrer was diagnosed with type 1 diabetes, a chronic condition where the pancreas makes little to no insulin.…
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