My name is Elena, mother to Jaicion. In 2021, I was pregnant with Jaicion, and the doctors ran tests that they would run on any mother-to-be. My doctor called me…
My name is Sarah. I am a solo mother to a beautiful five-year-old named Ensley! I’m not quite sure where to begin, but my world abruptly changed post-COVID-infection: January 7th…
Acknowledgment: This patient story is sponsored by Day One Biopharmaceuticals and is promoted through the Patient Worthy Collaborative Content program. We only publish content that embodies our mission of providing…
This article is a continuation of a previous story, and is an excerpt from original author Isabella Cristobal's post. To read the first part of the article, please click here.…
Let’s start at the beginning of my long journey. My name is Laura, and around fifteen years ago, I was diagnosed with type-2 diabetes and prescribed medication to control it.…
When asked about the emotions they felt when they were diagnosed, many members of the rare disease community recall a sense of loneliness. Many of us turn to advocacy group…
From Diagnosis to Determination: My Friedreich Ataxia Journey I was always clumsy. I could never walk in a straight line down the street, bumping into my parents and getting told…
My name is Brenda. In April 2021, I received a life-changing diagnosis of Primary Biliary Cholangitis (PBC), which I attribute to divine intervention. The journey began in January 2021, when…
Alpha-1 Antitrypsin Deficiency: According to the Alpha-1 Foundation, 1 in 1,500 to 3,500 people of European descent are affected by this rare genetic disease. Antitrypsin or A1AT is a plasma…
A little background on me - I was born and raised in Western NY. I am married and have two daughters. They keep me and my wife busy and our…
There was rarely a quiet moment in my childhood home as the youngest of seven kids in a bustling, loving family in Pittsburgh, Pennsylvania during the 1970s and 80s. My…
This is Rachel Heilmann's story - This is about how grief can fuel action, and why the smartest innovators are the ones with nothing left to lose and everything left…
Patient Worthy is fortunate to be partnered with the Glanzmann Research Foundation, Inc. and proud to present Joy's story of living with Glanzmann Thrombasthenia (GT). To learn more about the…
Patient Worthy is so grateful to our partners IPPF-The International Pemphigus & Pemphigoid Foundation and for the change to share Halima's story. IPPF's mission is to improve the quality of…
Patient Worthy is proud to support Parkinson's Disease Awareness Month, and we are honored to share John's story. To read John's story about Grief in Early Diagnosis, click here. The…
Patient Worthy is privileged to share Jenny's story through our partnership with the Aplastic Anemia and MDS International Foundation. Since 1983, the AAMDS International Foundation has served the aplastic anemia,…
My name is Pashondra James and I am a CHRONIC ILLNESS WARRIOR! My fight with my health started way before I was diagnosed. I was misdiagnosed twice before 2011, and…
Patient Worthy is proud to support Parkinson's Disease Awareness Month, and we are honored to share John's story. It was something my therapist told me that started this whole thing.…
Hi everyone, my name is Dwayne; I am 57 years old. I was diagnosed with Late Onset Pompe disease (LOPD) in November 2018 when I was 50 years old. I…
Meredith’s Medical Journey Meredith Grace was born full term. During the first few hours of her life, she seemed extremely uncomfortable and would only be content in my arms. After…
Nothing about meningitis is fair. In mere moments it can devastate lives and destroy families. It can take away dreams and shatter plans. These factors make marking my 20th year…
Jessica is coming up on six years of breast cancer survivorship. She speaks to the importance of performing self-exams, the myth that "you're too young to have breast cancer," and…
Note: This patient story was contributed by one of Patient Worthy’s partners, HAE Junior – an organization dedicated to improving the lives of children and young people living with hereditary…
Editor's Note: We believe that patients are a key part of developing and leading the conversation in disease communities. Patient Worthy sometimes partners with reputable agencies that wish to speak…
Editor's Note: We believe that patients are a key part of developing and leading the conversation in disease communities. Patient Worthy sometimes partners with reputable agencies that wish to speak…
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