Patient Stories
Teen cancer survivor rediscovers her confidence with prosthesis
At just 18 years old, Gabbi Stewart is a two-time survivor of two very different types of cancer. While her care team acted quickly to aggressively treat her most recent cancer, Stewart was faced with what she says was her greatest challenge: building back the self-confidence that the disease had eroded. A rare diagnosis In ... Read More about Teen cancer survivor rediscovers her confidence with prosthesis
Clinical Care
Racial differences in response to asthma therapies, and other AsthmaNet lessons
African Americans have higher rates of serious asthma attacks, hospitalizations, and asthma-related deaths than whites. Now, a large multicenter study of African Americans with poorly controlled asthma finds that one size doesn’t fit all when it comes to common asthma treatments. Results appear in The New England Journal of Medicine (NEJM). The randomized study had ... Read More about Racial differences in response to asthma therapies, and other AsthmaNet lessons
Patient Stories
Ellery’s story: The mystery of opsoclonus myoclonus syndrome
Ellery was a normally developing 2-year-old when her skills took a dramatic shift backwards last winter. “She started wobbling when she walked, like someone who had had a few beers,” says her mom, Maura. “Then she developed tremors in her hands, couldn’t put a spoon to her mouth and she stopped playing with any of ... Read More about Ellery’s story: The mystery of opsoclonus myoclonus syndrome
Health and Parenting
How our children’s rare conditions created our special bond
Twenty years ago, Brad McNamara and Joel Klein became roommates at Northeastern University. Little did they know that years later their friendship would become a vital source of support for themselves and their families, connected by the bond of parenting a child with a rare condition. The families’ medical odyssey began in 2014, when Joel ... Read More about How our children’s rare conditions created our special bond
Patient Stories
Samantha’s story: ‘I was bullied by a classmate’
During the fifth grade when Samantha was 10 years old, she was bullied by a male classmate. She remembers walking through the halls of her elementary school and hearing the bully call out these words: “Why are you on this earth? You don’t deserve to be alive.” The bullying followed her every day. “I didn’t want to ... Read More about Samantha’s story: ‘I was bullied by a classmate’
Patient Stories
How a broken leg and a transatlantic flight led to a deep vein thrombosis
Pain was 16-year-old Katerina Dalmanieras’s first warning sign when she returned from a family vacation in August. The high school junior, who fractured her fibula a month earlier, was in a leg brace and on crutches, so she had not moved during the seven-hour transatlantic flight. “When I got home from the airport, my leg ... Read More about How a broken leg and a transatlantic flight led to a deep vein thrombosis
Patient Stories
Hip pain resolved, Louise takes steps to become a surgeon
Louise Atadja couldn’t remember the last time her two big toes touched. Ever since she was born, her feet rotated out. As she got older, the outward position of her feet became more pronounced. “It caused me to walk strangely and run weirdly,” says the former track star who excelled in her sport even though ... Read More about Hip pain resolved, Louise takes steps to become a surgeon
Patient Stories
Against all odds: Mila’s unique mutation, and her own custom drug
Ed. note: Mila passed away in February 2021, at age 10. The Mila’s Miracle Foundation continues to work to pave a pathway for personalized treatments. The FDA recently released a draft guidance on testing custom drugs such as Mila’s in patients. As a baby and toddler, Mila was healthy, active, and — in some ways ... Read More about Against all odds: Mila’s unique mutation, and her own custom drug
Research
Shooting for the moon: From diagnosis to custom drug, in one year
Ed. note: Mila passed away in February 2021, at age 10. The Mila’s Miracle Foundation continues to work to pave a pathway for personalized treatments. The FDA recently released a draft guidance on testing custom antisense oligonucleotides (ASOs) in patients. One weekend in January 2017, Timothy Yu, MD, PhD, was relaxing at home when his ... Read More about Shooting for the moon: From diagnosis to custom drug, in one year
Clinical Care
Caring for immigrant children in politically contentious times
Facing public outrage, the U.S. Department of Homeland Security recently reversed their decision to end medical deferred action, a program allowing immigrants with serious illnesses to remain in the country while receiving lifesaving medical treatment. Among those most relieved by the reversal was Dr. Lakshmi Ganapathi, pediatric infectious disease specialist at Boston Children’s Hospital and ... Read More about Caring for immigrant children in politically contentious times