The hashtag #hotpersoninawheelchair went viral after the Youtuber and activist Annie Segarra used it as a response to an offensive tweet by Ken Jennings, reports The Guardian. Jennings, best known…
According to a story from wlwt.com, thirteen-year-old Diego Ramirez has been crossing the finish line at the Flying Pig Marathon for seven years, and he recently completed the finish again…
I have always had a gusto for life. Big dreams. Grand ideas. Strong and independent with a will to fight for what I want. And while I’ve had my share…
My name is Stephanie. I am Tristan's older sister and a Registered Nurse. I spend a lot of time with him as he requires nursing care around the clock. I…
26-year-old Ilka Brühl of Germany was born with ectodermal dysplasia, a group of genetic disorders that involve a facial cleft and overgrown airways, defects of the hair, nails, teeth, skin and…
As a society, we're always watching SOMETHING. Television, smartphones, tablets, smart watches, computers - we're always glued to some form of media, so it's always nice when the people we…
This blog post was originally published on the KIF1A blog. We are republishing it here on Patient Worthy with permission. I was recently asked if I was confident that a…
According to a story from the Chillicothe Gazette, twelve-year-old Brooke Hopkins has already had to face chronic inflammatory demyelinating polyneuropathy and a devastating injury in her young life. However, through…
According to a story from the Chicago Tribune, Maine South High School, located in the Chicago suburb of Park Ridge, Illinois, raised over $60,000 for Huntington's disease research. The school…
According to a story from Newsday, a young girl with osteosarcoma named Amelia Eldred had a portion of her left leg amputated, the central section of the leg removed, and…
According to a story from Rare Revolution Magazine, Georgia Hart was first diagnosed with Friedrich's ataxia when she was 15 years old. Since then, living with this rare disease has…
Kelsey is a unique child. Her story still doesn’t have an end or an answer. Only suggestions. Maybe mitochondrial disease. Brain atrophy. The two could even be connected. Kelsey’s parents…
According to a story from the Peterborough Telegraph, James Willis received a disaster diagnosis on his first Valentine's Day after getting married at age 29. James had been worried about…
According to a story from the Sydney Morning Herald, two-year-old William McLennan, son of Naomi Taylor and Ben McLennan, was diagnosed with spinal muscular atrophy about a year ago. The…
Phillippa Farrant, whose son, Daniel, has been diagnosed with Duchenne muscular dystrophy (DMD), recently appeared in Parliament in the UK to fight for improved access to care and treatment for…
Click to read parts one and two of this story. According to the Center for Disease Control, Lyme disease is the fastest growing insect-borne infectious illness in the United States.…
Doctors haven’t been able to work out the cause of a young woman’s medical symptoms, and now the New York Times is appealing to the public for suggestions. This article…
To read part one of this story, click here. Morgan is a young woman in her early twenties who has been living with symptoms of extreme pain on a daily…
According to a story from biotechprism.com, ten-year-old boy Jed Kagan of South Africa was crippled by debilitating pain when he first appeared at the Red Cross War Memorial Children's Hospital in…
According to a story from People, a little girl from Ohio has faced major health challenges since her birth. Grace Rosian, who was born with Down syndrome, was diagnosed with…
Terrence Merrill shares the challenging emotional realities of raising a child with Sanfilippo syndrome. You can read more background about the Merrill's battle against this rare disease in our article here.…
When I was diagnosed with Parkinson's Disease (PD) in 2000, I first thought of my three children and how my diagnosis would impact them. How would I tell them? Would I…
In order to honor Cystinosis Awareness Day, which takes place on May 7th each year, a man will attempt to walk 57 miles in a single day in order to…
I lost my fiancé, Ashley “Bea” Briggs, due to complications from cystic fibrosis a little over a year ago in early 2017. We met early in the summer of 2015…
The prolonged legal battle over Alfie Evans, a toddler with a serious undiagnosed degenerative neurological disease, has reached a final verdict. The UK doctors currently caring for Alfie made the…
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