My name is May, and I was diagnosed with lung cancer in May of 2022. I was 37 years old — a wife, a mother to a toddler, and someone…
I often find myself initially stuck on where to start when telling our story. I say “our” because that’s the truth of this rare disease journey: everyone who touches Natalie’s…
Editor's Note: Patient Worthy is honored to bring you this article originally authored by Shannon Cloud, Patient Advocacy Director of the Dravet Syndrome Foundation. A few words spoken. Sharing an…
Patient Worthy is grateful to our partner Elephants & Tea for providing the following article by Brittany Wilson, a stage 3A Melanoma, R-ISS stage 2 IgG Lambda Myeloma patient and…
Editor’s Note: This is the third and final part of a caregiver story-share. To read part one, click here. For part two, click here. These moments of light, these tiny…
Written When Diagnosed On January 15th, 2024 my life changed forever. I felt my right breast turn completely solid. I knew something wasn’t right, so I went to my doctor.…
In October 2021, I was diagnosed with a rare, possibly life-threatening autoimmune disease called Myasthenia gravis. Some people said I had to “reinvent myself,” because indeed I could not, and…
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…
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