Editor’s Note: This is the second part of an ongoing story. The third and final part will be published Tuesday, June 25th. To read part one, click here. The initial…
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…
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…
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…
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…
This isn’t a cute extra. It’s essential… Let’s stop calling it fluff and start calling it what it is: trauma-informed care in action. Medical play isn’t just a feel-good initiative…
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…
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…
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…
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 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…
A little background on me, my name is Gene Pohancsek and I was born and raised in western New York. I am married and have two daughters. They keep my…
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