In 2019 I presented with dark purple spots on my legs, and my neurologist decided to do lab work. My labs showed a high IGM level, so I was then…
Disclaimer: The views and opinions expressed in this article are those of the author and do not necessarily reflect the official policy or position of Patient Worthy. At just 5…
Editor's Note: This is the first part of an ongoing story. The second part will be published Tuesday, June 17th. The fluorescent lights of the hospital room hummed, a stark…
Three hundred and ten: The number of days we had prior to our lives forever changing. On April 13, 2022, it was a day like any other. My husband and…
Patients are often caught in a system of impersonal treatment when the "business" of medicine and health insurance predominate over human health. It is extremely rare today for physicians to…
Hello, my name is Melissa. My journey with scleroderma began with symptom onset in 2008. I sought immediate care from a rheumatologist, but was not diagnosed until 2017 with undifferentiated…
We all know that changing habits of behavior changes our life experiences, but putting this to practice is where a lot of us get stuck. Either we doubt our ability,…
Editor's Note: Patient Worthy is honored to share this patient story, originally authored by Jeri Burtchell. For the last month or so I’ve been trying to come to grips with…
I have had cervical dystonia since 2001. It was very severe for many years, but over time I have been able to gain significant control over my symptoms using a…
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…
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.…
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…
In 2003 at the age of 38, I was diagnosed with primary biliary cholangitis, or PBC. I went for routine bloodwork which came back showing crazy high liver function and…
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.…
For Bubba 7/31/1997 - 7/22/2018 How do you love a child you know will die young? You love recklessly, with abandon. You don’t mean to - but you can’t stop…
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