My name is Jeremiah, and I have Postural Orthostatic Tachychardia (POTS). My body has been a source of significant challenges since I was very young. Asthma, unexplained rashes, passing out,…
A new documentary, Unrest, explores myalgic encephalopathy (ME), also known as chronic fatigue syndrome. The film was premiered at the Sundance Film Festival 2017 where it received an award for…
Andrew Macnab received a diagnosis of dermatomyositis last year. His sister Helen Keith is preparing for her first marathon in order to help Andrew. The money Helen raises will go…
A fourteen-year-old girl called Kira Noble from Edinburgh, Scotland has raised £340,000 (about $460,000) for surgery to remove her neuroblastoma tumour, reports The Daily Record. Kira was first diagnosed with…
According to a story from Cambridge News, Ethan Monk's Williams syndrome managed to evade detection until just two years ago. Ethan had some peculiar symptoms, such as delayed development, unusual…
According to a story from the Tennessean, learning that both her husband and daughter had the rare and dangerous disease atypical hemolytic uremic syndrome (aHUS) was devastating for singer-songwriter Cameron…
According to a story from BBC, Alex Hill was just eight-years-old when his mother, Sarah, started forming a hunch that something was off. The first warning sign came when Alex…
Many times, diseases can take very physical tolls on a person’s body. These physical symptoms can sometimes be uncomfortable, they can be painful, and sometimes they may even be embarrassing…
This patient story is written by PW Contributor Kim Hartgraves. I was in the military for nine and a half years, until I had to accept an honorable under medical…
Energy industry leaders such as Love’s and Trillium recently held a fundraiser in Houston, Texas. The funding supported Texas Children’s, the local branch of Children’s Miracle Network Hospital. One unique…
A woman from the UK, whose husband was diagnosed with Parkinson's disease many years ago, has the unique distinction of being able to detect the disease in patients through a…
According to a story from The Independent, the 60 years of blood donations from a single man may be directly responsible for saving the lives of 2.4 million babies. The…
According to a story from CTV News, Triss Hunter is a junior at Ecole Mission Senior Secondary School in the Fraser Valley. This year, she is not being permitted to…
Jordy Cernik isn't afraid of anything. It's not that he has some kind of super ability that makes him fearless or special secret agent training that defies normal reactions to…
In Cincinnati, there are two children, Taryn and King Walker. They are 13 and 11 years old respectively. Taryn and King are excellent students and attend the School for Creative…
Whenever a rare disease family is in crisis, which happens all too frequently, the request for prayers goes out to others, knowing that the response will bring about comfort. Rare…
Dear UK businesses and decision makers within them, I know it’s mental health awareness week but for my benefit could you for just a couple of minutes focus on the…
According to a story from the Leamington Observer, four-year-old George Young's first words were 'mama' and 'papa,' but he did not know how to say them for very long. George's…
When I was pregnant with my second child, I knew it would be different. We had all the essentials from having my daughter a few years earlier, and advice from…
Ever since I was little I have always loved the thought of Mother’s Day. My mom has always been a hero in my mind. I remember thinking to myself, “She…
According to a story from The Tennessean, mother Melissa Hogan has been inspired by her son Case's Hunter syndrome to start a nonprofit organization called Project Alive. The primary purpose…
No one should outlive their child. Losing two children to the same rare disease is a pain that most parents can never understand and hopefully never will. According to a…
According to a story from Newshub, Freda Evans learned early on that there were no treatments covered under the New Zealand health care system to treat her Pompe disease. Freda…
According to a story from blackpoolgazette.co.uk, the NHS has decided to postpone a decision to approve a drug for the treatment of Batten disease. This illness, which is fatal is…
According to a story from the Yorkshire Evening Post, five-year-old Toby Nye, from Leeds, has been seeing significant benefit from an antibody therapy treatment for his neuroblastoma. The therapy is…
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