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…
Since April 2019, I have been actively seeking out adults (18+) who are willing to publicly share their stories about their lives with rare and chronic diseases. I feel it…
According to a story from OMRF, things were looking dire for Tonja Martin after she was diagnosed with multiple sclerosis. This happened to her in 2010, and she promptly began…
If you are like me and probably most people, in today’s busy world it is a big challenge to be still and mentally at ease. This is such an important…
By Rachel Whetstone from In The Cloud Copy Shelly Wheaton began a car sign campaign in September to look for a live kidney donor. She was on dialysis because…
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According to a recent article in Yahoo News, Johan’s mother’s seven-year-old brother died years ago of chronic granulomatous disease (CGD). The mother, Maren, was told that she also had…
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Ty Eschenbaum’s world of high school football and working on his family’s ranch and farm changed suddenly after his freshman year when he was diagnosed with leukemia. Ty, who…
Susan Winn’s family history of ovarian and breast cancer can be traced back to the 1860s. Susan’s adult daughters, Kathryn, Bridget and Maureen, were recently interviewed with CURE® (Cancer Updates Research…
The human spirit can be a remarkable force. Robb Freed cycled thousands of miles by himself to raise awareness for epidermolysis bullosa (EB) -- a rare illness that took the…
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According to recent articles in Runner’s World Magazine, having a diagnosis of multiple sclerosis has not stopped Cheryl Hile, Jennifer Lee or Melissa Ossanna. Each woman is fighting the symptoms…
Written by: Paul Pavao The most important thing I can tell you is that Blastic Plasmacytoid Dendritic Cell Neoplasm (BPDCN) can be survived. As of 2019 survival requires a bone…
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