Rare Patient Starts Card Project for Hospitalized Kids
July 2, 20175:16 am Comments Off on Rare Patient Starts Card Project for Hospitalized KidsSOURCE Jen Rubino knows how it feels to be sick and in the hospital at a young age. The 22-year-old
Author Archives for Patient Story
Perth Family Confronts Metachromatic Leukodystrophy Diagnosis in Newborn
June 27, 20175:24 am 45 Commentsby Liam Croy A Perth family devastated by a rare genetic disorder has been thrown a lifeline by a world-leading
Tunnel Vision, Headaches Lead to Rare Diagnosis of Paroxysmal Nocturnal Hemoglobinuria
June 27, 20175:06 am 1 Commentby Skyler Hrabe I will never forget the feeling of utter helplessness, despair and disbelief as the realization dawned on
First Duchenne Muscular Dystrophy Boy in Canada to Begin Drisapersen Redosing
June 26, 20175:06 am Leave your thoughtsFive years ago, 12-year-old Alex Chiabai was one of the first boy in Canada to begin taking drisapersen, a promising
Australian Man Experiences Rare Instance of Guillain-Barré Syndrome (GBS)
June 20, 20175:47 am Leave your thoughtsThanks to 9News.com.au for this piece. A Sydney man who was paralysed by a rare autoimmune disease while holidaying in New
Brother and Sister Receive Rare Cystinosis Diagnosis
June 19, 20175:41 am Leave your thoughtsJoel Strickland is a rare boy, not only because he is a diminutive, 12-year-old, guitar-playing, cowboy-hat-wearing, dirt-bike-riding fisherman and hunter
British Woman Diagnosed with Ischemic Oesophagus, First Mistaken as a Heart Attack
June 19, 20175:37 am Leave your thoughtsA widow has become the first Briton ever to be diagnosed with an ultra-rare disease after she regurgitated seven pints
Baby with Dextro-Transposition Finds Life-Long Success After Surgery
June 17, 20175:27 am Leave your thoughtsby Natalie McGee-Lester I was born with dextro-transposition of the great arteries in Houston, Texas in 1975. During that time,
Rare Disease Inspires Man to Run for Lieutenant Governor
May 11, 20175:13 am 5 CommentsBy Patrick Wilson Richmond – SOURCE Gene Rossi lay in a bed at Johns Hopkins Hospital in Baltimore, dangerously ill,
Prince Harry Visits Siblings with CNL2 Batten Disease in London Hospital
May 11, 20175:08 am 36 CommentsPrince Harry has shown remarkable compassion. Prince Harry has shown extraordinary sweetness by visiting two children in hospital. It’s not
Hope For 16-Year-Old California Boy Fighting Rare Genetic Disease
May 10, 20175:57 am Leave your thoughtsBy Justine Waldman, SOURCE It is a story about courage, tenacity, and perseverance. It is about parents who are keeping
Jackson’s Journey with UBE2A
May 9, 20175:30 am 47 CommentsJackson was my second pregnancy. We didn’t know we were having a boy until he came along two months early!
