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…
People often tell me how upbeat and positive I am, despite living with pain from dystonia all day, every day for the last 20 years. I would say this is accurate…
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According to a recent article in the MalayMail, it occurred to Abdullah’s doctor that the 67-year-old would be an inspiration for others who have kidney failure. His nephrologist, Dr.…
A correct diagnosis is often difficult to obtain, especially for a rare disease. Symptoms can be attributed to more common conditions, or they can be written off entirely. Rylee…
30 Things About My Rare Invisible Illness You May Not Know By Debra Richardson 1. The illness I live with is: stiff person syndrome & insulin-dependent diabetes. 2. I was…
By Rachel Whetstone from In The Cloud Copy When Helisabed Romano was pregnant with her daughter, she got some bad news. The the developing baby had spina bifida, a defect…
This is part two of the story, click here to read part one After searching for a new neurologist, we found one only 30 mins away that was willing…
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According to a recent article in the UK Newcastle Chronicle, when doctors gave Leanne Buckley an opportunity to terminate both her pregnancies, Leanne and her husband Michael were emphatic…
According to a story from RT, the Lobanov family of Nizhny Novgorod, Russia has been ravaged by Fabry disease. After a bureaucratic quagmire that has gone on for around three…
I want to start off by saying that the intention behind my words are not to convey or express any sort of anger, hatred, or resentment. I am choosing to…
According to a story from the Manchester Evening News, Tom Miller turned 30 years old in January 2019. For Tom, that age was more of a milestone than it was…
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As originally reported in Brandpoint, Kailey experienced a haunting tragedy as a child when her sister, Ashley, who was a year younger, experienced crippling symptoms from their shared progressive disease…
By Rachel Whetstone from In The Cloud Copy Peggy Nipper was struggling with polycystic kidney disease (PKD). Her kidneys were beginning to fail after developing numerous cysts. It can often…
This past week Justin Bieber publicized some surprising news amidst some fans commenting that he looked like a “drug addict.” Bieber, 25, recently posted on his Instagram that he…
According to a story from ALS News Today, the nation of Sweden is starting to emerge as a leader for amyotrophic lateral sclerosis (ALS) research in Europe. This is mostly…
According to a story from the University of Aberdeen, 57 year old Sandy Patience of Inverness, Scotland, is one of a total of 801 Huntington's disease patients from around the…
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