Shelley Simmonds recently attended the Festival of Genomics, the largest genomics event in the United Kingdom that is quickly growing into the biggest event in the world. It involves…
Primary sclerosing cholangitis (PSC) is a chronic liver disorder that typically affects males over the age of 30. That is why Di'Jon Thomas was so surprised to be diagnosed with…
According to a story from Sixth Tone, life for the Lu family of Yuncheng, China, has never been easy. Life in the region has slowed thanks to the coronavirus, but…
Susan Mann was seven years old when she was diagnosed as having Hashimoto’s thyroiditis, an autoimmune disease that affects the thyroid. According to a recent article in the online…
The Boston Globe recently interviewed the principals in a case brought by the Pelletier family against the Boston Children’s Hospital. The article gives details about a family’s charge of…
Abbey Luffman was a 16-year-old from Owego, New York excited about getting her learner's permit. She was also very generous; she didn't even hesitate to check the box for organ…
Obtaining a diagnosis for a rare disease tends to be very difficult. Doctors do not immediately expect that rare conditions are causing one's symptoms; they blame more common conditions first.…
When your child receives a rare diagnosis that needs instant care, you don't have time to contemplate finances and plan out your budget. You just have to act. That was…
.jpg)
Jennifer Schlegel’s life began earlier than expected with an unanticipated disease. According to an article in The Lantern, Jennifer was born prematurely and diagnosed with spastic diplegic cerebral palsy.…
Lucy Lintott is the youngest woman in Scotland to be diagnosed with motor neurone disease (MND). As it causes progressive weakness, Lucy did not think it was possible for her…
By Natalie Homan from In The Cloud Copy Theo Thomas of Secret Harbour, Australia, may be a shy, soft-spoken 8-year-old, but he loves racing his motorcycle in his town’s Lightweight…
According to a story from stcatherinesstandard.ca, former firefighter Tom Salisbury was 54 years old when he was first diagnosed with a form of vasculitis, a type of rare autoimmune disease.…
One of the wealthy regulars on the TV show Shark Tank made his millions by starting a home-based business selling tee shirts. An article in Bridgeport’s ctPost publication chronicles…
By Danielle Bradshaw from In The Cloud Copy 13-year-old Cam Howard, a young Pittsburgh resident, recently did an interview with the Pittsburgh KDKA News’ Kristine Sorensen where he opened up…
Hypotonia Ataxia, and Delayed Development Syndrome Hypotonia, Ataxia, and Delayed Development Syndrome (HADDS) is caused by mutations in the EBF3 gene which is found on chromosome 10q26. Its discovery just…
Steffanie Strathdee and her husband Tom Patterson are both scientists who work at the University of California. On an innocent trip to Egypt were they spent a romantic night…
According to a story from Chronicle Live, 36 year old Donna Campbell was found unresponsive in her hospital bed on June 22nd, 2019. She was officially pronounced dead the following…
As originally reported in ArcaMax, when you get a diagnosis for a terminal rare disease, a wave of emotions crashes over life. Brian Wallach emerged clutching 'hope.' In 2017, Brian,…
A family is grieving for their daughter and taking it one day at a time in the face of a terminal diagnosis. Kelly and Andrew Mills became pregnant with…
In another article I wrote for Patient Worthy, I talked about the emotional pain of “victim mentality” when faced with a health or other life challenge. In this article, I…
According to a story from Essex Live, Lily Wythe is a fourteen year old girl who was recently diagnosed with a rare form of brain cancer called diffuse intrinsic pontine…
According to a story from USA Today, 61 year old Jerry Devries is currently the oldest living patient with a very rare disease: Proteus syndrome. An unusual disease with only…
According to a story from the Stamford Advocate, rock legend Ozzy Osbourne is making plans to go on tour again next fall. This is despite the fact that he has…
The State of PTO Of all of the industrialized countries in the world, the United States is the only one that in the year 2020 still doesn't guarantee that workers…
In a recent podcast called Functional Medicine Research, Dr. Scott Antoine was interviewed by the podcast hosts about PANDAS. Dr. Antoine is an osteopathic physician who uses a "fully…
© 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.
