According to a story from Rare Disease Report, Nichol Kirby, who was diagnosed with acute intermittent porphyria in 2015, faced an arduous path to her diagnosis. Her constant pain, which…
According to a story from abc.net.au, ever since Massimo Damiani was first diagnosed with a leukodystrophy, his parents, Sally and Stephen, have been committed to promoting research efforts and new…
To read part one of this story on cystinosis, click here. Briana and Ashley are two adult women from opposite regions in the United States. Briana lives close to her…
Nevaeh was born on the 3rd of September at 12:38 AM by emergency section due to the cord being wrapped round her neck, which was causing her heart rate to slow…
She wears a lacy white dress with a long, white veil. Her beautifully shaped eyebrows arc over long-lashed eyes. Her smile, illuminated by bright red lipstick, speaks of the happiness…
According to a story from the Oxford Mail, Stuart and Kira Connor were devastated when their daughter Grace, who was only three years old, suddenly passed away because of mitochondrial…
According to a story from the Daily Herald, Kevin Barnes, a man from Wauconda, Illinois, believes that his experience with esophageal cancer helped spur his own spiritual growth. This is…
According to a story from Telegraph & Argus, 56 year old Andrew Johnson is getting an innovative new procedure that is offered on the UK's NHS in order to relieve…
When others learn that you are the parent of a child with a rare disease, they most likely correctly assume that doctor appointments and hospitals might be involved. Yet few…
According to a story from CNN, substitute teacher Cynthia Tisdale was widely admired by her family and friends. Cynthia was murdered in the Santa Fe High School shooting on May…
I'm Celeste, and I'm sharing my story because too many ill people go undiagnosed and too many healthy people know nothing of it. Being chronically ill is like (for lack…
According to a story from ktvq.com, Susan Henderson of Bozeman used to revel in painting vast, impressive canvases and teaching art classes geared towards children. Unfortunately, her diagnosis of chronic…
The Young family from Oregon, U.S. have used genetic screening to test their embryos for a variation of the BRCA gene that significantly increases the risk of breast cancer, reports…
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…
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