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…
Popular Canadian singer Justin Bieber stunned the world when he announced he was diagnosed with Ramsay Hunt syndrome following his facial paralysis. Ramsay Hunt Syndrome Ramsay Hunt syndrome (herpes zoster…
Meghan Rourke saw the need for more open conversations about chronic illnesses, sparking her to write The Invisible Kingdom: Reimaging Chronic Illness. In an excerpt from her novel, she shares…
When Alicia McLeod entered her 20s, she began noticing that she was showing a few concerning symptoms. Eventually, Alicia visited the doctors, where she was diagnosed with syringomyelia. According to…
Andrew is a pretty tough kid - he had already undergone four open heart surgeries by the time he was three years old. Now, at age 21, he's added two…
When Lauren Atkins and William Bromley welcomed their son Charlie into their lives, they were thrilled. Jessie, their daughter, may have been even more thrilled, already having a soft spot…
Personable. Loving. Impactful. Those are all words that Angie Kane would use to describe her son Colton, who passed away at 21 years old in October 2021. When Angie talks…
For the last two and a half years, the COVID-19 pandemic has dominated the headlines. It has been hard to look online – or do anything in person – without…
Pancreatic cancer is one of the deadliest forms of cancer. According to the American Cancer Society (ACS), only about 11% of patients are expected to survive more than five years…
Lately, the first thing that enters a person’s mind if they encounter an unusual pain is that they may have cancer. Yet that was the last thing Georgina Masson, an…
According to a recent article, popular Filipina television host, also known as the Philippines' “Queen of all Media," has been diagnosed with Churg-Strauss Syndrome. Churg-Strauss Syndrome Churg-Strauss syndrome, or eosinophilic…
Jeremy Schreifels was just a young child when he was first diagnosed with Tourette syndrome, a nervous system disorder characterized by sudden, involuntary movements or vocalizations (“tics”). In Jeremy’s case,…
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.
