Kruz and his sister Paizlee are the only known siblings diagnosed with the ultra-rare condition Schimke Immuno-Osseous Dysplasia. Their parents, Jessica and Kyle, are doing everything they can to raise…
I am a patient who has ITP and attended the PDSA conference this year in Cleveland, Ohio. I learned so many new things from other attendees and from the outstanding…
Aidan Maddocks, 14, from Pietermaritzburg, was diagnosed with Biliary Atresia at birth, a childhood liver disease that only affects 1 in 10,000–15,000 live births. He was given a life expectancy…
According to a story from ABC News, Alexia Baier was four years old when she came down with strep throat, an infection caused by group A streptococcus bacteria. It is a…
According to a story from the Los Angeles Daily News, for children with debilitating rare illnesses like cerebral palsy, epilepsy, or muscular dystrophy, it can often take a long time…
A married couple from Grimsby in England are planning to undergo kidney transplant surgery. Paula will donate her kidney to her husband Kevin, who has polycystic kidney disease. The original…
Having a child was an exciting moment for the Blackwood family. Their son, Sam, is now nine years old. It was around his first birthday, however, that they started to…
Jaiden, a twelve-year-old boy, has been diagnosed with stiff skin syndrome, a rare disease that causes his skin to harden. His family has been sharing their experiences with the condition.…
According to a story from image.ie, the Italian journalist Veruska Anconitano first began to experience symptoms of myasthenia gravis when she was a child. She recalls bouts of weakness affecting…
Pain is one of the most intrusive things we can experience because it impacts nearly every aspect of our lives, especially if it is chronic. As Bonnie Prudden said, “Pain,…
Asher Camp is five years old. His parents, Amanda and Jeremy, had two daughters before Asher. That’s why when Asher progressed differently, they knew to be concerned. After quick action,…
Chronic pain has a sinister way of impacting practically every aspect of our lives. One major area is our social life. Since chronic pain is often misunderstood by others and…
People Magazine published an article about 20-year-old Kara Dunn who suddenly became paralyzed during a vacation to Spain, due to a rare disease she didn't know she had. Guillain-Barré Syndrome…
The National Health Service (NHS) England is facing criticism following their decision not to fund the drug everolimus as a treatment for tuberous sclerosis complex associated refractory epilepsy. In comparison,…
At 16 years old, I was told I would need a liver transplant within ten years. Being told at any age that you will eventually need a liver transplant is…
According to Medical Xpress, a new study is underway that may change the future for those who have a condition called rheumatoid arthritis. Dr. Hazelwood from Cumming's School of Medicine…
According to a story from Deseret News, after she was diagnosed with multiple myeloma, Jenny Ahlstrom almost immediately had to make crucial decisions regarding her treatment: decisions that could mean…
The Joshua Frase Foundation has released a new eighteen-minute documentary about the family’s fight for more research into gene therapies for myotubular myopathy, the rare condition that Joshua Frase was…
Danielle and Jonathan Foltz live on the New England coast with their three children. In an CNN article, Wayne Drash documents their meteoric fall from a mission family with big plans…
According to a story from the Washington Times-Reporter, Michelle Marcinak's three sons-- John Henry, Leo, and Rafe-- were all diagnosed with the rare gastric condition eosinophilic esophagitis. Early symptoms of…
According to a story from the Globe and Mail, Michelle Quinlan was overwhelmed when her child Avery was diagnosed with Coffin-Siris syndrome, a rare genetic disease that can cause intellectual…
Bruce Howell is 63 years old living with retinitis pigmentosa. He’s been legally blind since age 37. As a result, public transportation is a critical service to him. Without the…
Ellil Mathiyan is the sort of lively character most people can’t believe experienced a double cancer diagnosis. He describes how people usually respond with “are you sure?” or “you’re kidding”…
As I’ve gotten older, I realize I’ve become more introspective, analyzing my relationships, emotions, spiritual well being, and mental health. While talking to others with rare diseases I’ve learned it…
According to a story from CNN, Nick Foles, who plays for the Philadelphia Eagles, helped lead the team to victory at the Super Bowl, and was awarded MVP for the…
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