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…
According to a recent article, a young boy who has been battling biliary atresia and was put on a liver transplant list has made miraculous progress. About Biliary Atresia Biliary…
Shortly after he was born, Asa Burnside was diagnosed with Niemann-Pick disease type A, a rare genetic metabolic disorder. Since then, Asa has brought so much joy to his family’s…
In September 2020, Amelia Bradford turned eight months old. Her family loved their fun, wiggly, and happy baby. But then Amelia’s mother Danielle noticed something concerning: a facial bruise around…
In a recent article at Porphyria News, Claire Richmond shares how writing has helped her process her diagnosis of porphyria and to feel connected to the porphyria community. Claire Richmond’s…
According to a recent article, a man who developed terrifying symptoms following a stroke was found to have statin-associated immune-mediated necrotizing myopathy. Unexpected Symptoms After Stroke When her…
When Ivy Reed was just two weeks old, she was first diagnosed with two conditions: non-verbal autism and propionic acidemia, the latter of which is a rare metabolic disorder. Because…
Don't forget to take a look at Part 1 of our interview, where Jessica discussed her trigeminal neuralgia journey, what this condition is, and why she decided to start the…
Before you read Part 2 of Lindsey's interview, make sure to go back and take a look at Part 1! In Part 1, we discussed Finn, the diagnostic journey for…
At the beginning of our interview, Lindsey Curley explains to me that there is a difference between listening and understanding. Listening is important, of course; she wants people to listen…
Getting a rare disease diagnosis can be difficult and take a long time. This can be a problem, as time is something that those with progressive illnesses don't have much…
Kelly Heger, founder of the AADC Family Network, shares her story of becoming a nurse to take care of her daughter with AADC deficiency. When my daughter, Jillian, was born…
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