WCVB NewsCenter 5 recently published a news item featuring Nancy and Paul Burke and their three daughters. The Burke family has been living in the shadows of the deadly Sanfilippo…
Bryan and Bradford Manning recently gave an interview to the Associated Press. The brothers told the story of their vision loss as a result of a rare degenerative eye disease.…
The road to diagnosis for a rare disease patient is often a long one. Countless doctors, appointments, and tests are typically needed to finally discover the cause behind one's symptoms.…
by Lauren Taylor from In The Cloud Copy A local Florida teenager has inspired her whole city after a sudden diagnosis with a serious neurological condition: Chiari malformation. Jordan Ray…
Elliot Preddie, age 12, is ready to get back to his favorite sport, football. He had to put off playing due to sickle cell disease (SCD). Elliot substituted taekwondo and…
Praise Aki Amedal, a Nigerian living in the city of Oriade, has just completed his first book entitled The Biological Prisoner . . . Finding Hope in a Failing Body.…
by Lauren Taylor from In The Cloud Copy Long QT syndrome, also called LQTS for short, is a disorder of the heart’s rhythm that can possibly cause the heart to…
by Danielle Bradshaw from In The Cloud Copy Elaina Pechota loves to dance. Back in 2018, however, the teen had a fall during one of her classes, and her entire…
When Jacqueline City went to a concert in high school, she didn't know that her life was about to change forever. At the time, Jacqueline was 18 and living in…
In early June, PatientWorthy wrote about a group of patients called "long haulers." These people, some healthy and some with pre-existing conditions, experienced extended COVID-19 symptoms, sometimes for months after…
28-year-old Melissa Loewen has always enjoyed helping others. It was this spirit of community that led her to a nursing role in the BC Women’s Hospital's NICU. But a few…
The winning entry for the 2019 Student Voice was published recently in the Orphanet Journal of Rare Diseases. The prize-winning article, a warm and personal account, was written by Annie…
Kara LeFrance Kara LeFrance is diagnosed with acromegaly, a rare disease, and she's been battling it since she was 20 years old. Unfortunately, it took eight years after her first…
When Jessica Kalnas was growing up, her mother Judy thought her daughter was just clumsy. The youngest of six kids, Jessica was always falling over: off of her bike,…
In 2016, 6-year-old Alec Ahmad loved club soccer, playing games with his two brothers, and running around with his friends at recess. He was full of energy. But every once…
My name is Mika Jayne Covington. I’m 29 years old and I live with an ultra-rare disease called cystinosis. I am also a transgender woman and my pronouns are she,…
During the beginning stages of COVID-19, there was a common refrain: "It's no big deal. It's just like the flu." But just a few months into this global pandemic, we…
When Elsa Cavazos was in high school, she experienced some physical "abnormalities" that she wasn't quite sure how to deal with. While peers worried about the occasional zit on…
"I thought it was a hernia." When George Benson experienced lower abdominal pain in 2009, at age 51, he wasn't concerned. He was a truck driver, artist, and family…
Five years ago, Leah Gaitan-Diaz's life changed when she was diagnosed with myasthenia gravis. But with this condition comes a lack of understanding or confusion over what it entails. In…
Kelly and Rory McElligott, of Highton, Victoria, Australia, have 3 beautiful children: Maggie, Billy, and Alice. But the family was shocked when two of their children, Maggie and Billy,…
As reported in Multiple Sclerosis News Today, Jessie Ace tells the story of receiving her diagnosis with multiple sclerosis at 22. She wrote, "I hate needles." She ranks being told…
As reported in Liverpool Echo; Faye was just 12 she began to have difficulty walking. She didn't realize it was her first encounter with the devastating disease that she had…
The UFC has some tough fighters in it. But 35-year-old Joe Ellenberger never thought that his most difficult opponent would be within himself. That is, his paroxysmal nocturnal hemoglobinuria (PNH),…
In 2003, Suzan Jackson was diagnosed with myalgic encephalitis, or chronic fatigue syndrome (ME/CFS). Shortly after, she was faced with the complexity of having a chronic illness. Should she tell…
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