Do you know about Lafora Disease? This rare genetic disease begins during adolescence. Your child starts their life healthy and whole, but then they decline, cognitively and physically, until they…
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…
Myrovlytis Trust, a UK-based charity and Patient Worthy partner, has developed a new resource for those facing osteosarcoma. This devastating cancer often occurs in childhood, teen, and young adult years.…
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…
In 2023, Marley Mansour of Rowlett, Texas and her family were told that Marley had an extremely rare genetic condition called NARS1 disorder. Now, Marley is the world’s first person…
The results released from the Phase III ESSENCE clinical trial, and recently published by Medical Xpress and in the NEJM, found that the drug semaglutide is effective in the treatment…
Raiden Messerli and his family thought that he had an ordinary case of the flu. Brandi Lewis, Raiden's mother, discussed in an interview with KCCI8 News how she still vividly…
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.…
Professor Ronald Breslow was a chemist at Columbia University who, in 1958, proposed the theory that vitamin B1 (thiamine) could regulate metabolism pathways in the body by stabilizing a reactive…
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.…
Immune dysfunction and inflammation have been found to play significant roles in Alzheimer's disease. An analysis of brain tissue in an animal model reveals a potential for immune system dysfunction at…
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…
Current research indicates that children and adolescents who were unvaccinated during the pandemic were much more likely to develop Long COVID. Researchers led by Perelman Medical School at the University of…
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…
Humans have been using tobacco as a drug for more than 12,000 years. It wasn't until the early-20th century that the link between tobacco and lung cancer (and other health problems)…
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…
Phenylketonuria, or PKU, is a rare inborn error of metabolism caused by a defect in the PAH gene that prohibits the correct production of an enzyme needed to process the…
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…
Blunt trauma from car accidents contribute to optic nerve damage and blindness. Glaucoma is also responsible for similar optic nerve damage. It is known to be the second worldwide cause…
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…
"Rock Bottom" is the story of a family who’s second born child, a son named Ashton, was born with Mucolipidosis Type II, a disease so rare and so frequently mistaken…
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…
© Copyright 2024 Patient Worthy
Sign Up With a Patient Worthy Account and Share Your Rare Story
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
