Studying tools to improve the quality of life for people with cystic fibrosis
Thanks to advances in treatments in recent years, people with cystic fibrosis (CF) are living longer than ever before. Along with this increasing longevity comes some ongoing challenges for patients — from adhering to their treatment plans to managing symptoms to optimize their quality of life. The Cystic Fibrosis Center, through the Division of Pulmonary ... Read More
Eva rides out the side effects of aggressive Wilms tumor treatment
Eva Quiroz loves horses. The 10 year old takes riding lessons, and this activity puts a smile on her face. Anyone watching her contentedly guiding a horse around the ring would just assume she has always been a healthy child, says her mom Carla. They would see no hint of what Eva has been through ... Read More
New research sheds light on risk of gluten exposure in the kitchen and classroom
Parents and teachers typically go to great lengths in the kitchen and in the classroom to ensure children with Celiac disease avoid gluten contact. But up until recently, little data has existed to quantify the risk that exists in a variety of scenarios. Now, new research suggests that while vigilance is key, people may be ... Read More
Good early results with gene therapy for rare immune deficiency
Brenden Whittaker, a college student in Ohio, has been caught off guard by his good health. Since he was young, a rare immune deficiency known as chronic granulomatous disease (CGD) had left him vulnerable to life-threatening infections. He was used to going in and out of the hospital, and then hooking up to an IV ... Read More
Decoding sickle cell disease offers new outlook for Lamarcus
When Lamarcus Jean visits the Hematology Clinic at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center, he makes himself right at home. The 6-year-old, whom his mom, Stephanie, describes as “wise beyond his years,” has been a patient here since he was born. Lamarcus has sickle cell disease, an inherited blood disorder caused by a mutation ... Read More
PICU Up! Program aims to increase mobility in ICUs
For decades, clinicians believed the most appropriate care for critically ill pediatric patients was sedation and rest. But in recent years, the tides have changed. Studies in adults have shown that sedation and immobility lead to increased mortality and morbidity, longer stays in the intensive care unit (ICU), increased risk of ICU delirium, and a ... Read More