May 7, 2016
By Michael O. Leavitt The late Neil Armstrong once said, "Research is creating new knowledge. " In recent years, the world has witnessed unprecedented medical advances that have forever changed how we research and treat debilitating diseases. For example, new discoveries in the field of immunotherapy are helping scientists rethink their approach to cancer. Hepatitis C, which had a cure rate of 40 to 50 percent just five years ago, is curable in nine out of 10 patients today. Even diseases like cystic fibrosis, which deprive most patients of living past their late 20s, are seeing new treatments after decades of having none.
May 23, 2015 |
Haddonfield baseball star Charlie Clarke did something special at the ballpark. His coach was amazed. But Clarke didn't make a diving catch in center field, steal a base or rope a game-winning hit to the gap. The senior stood up in front of a room filled with more than 200 people and spoke from the heart about his appreciation for their contributions to his special cause. "I couldn't believe it," Haddonfield coach Bob Bickel said. "Here was this young guy and he handled himself so well in front of so many people.
April 17, 2015 |
Even in kindergarten, Lisa Marino knew how to deal with her cystic fibrosis, said Danielle Westfall, her friend for 35 years. "From the time she was 5, 6 years old, she knew when to take her medicine," Westfall said, and together in school, "we would walk down to the nurse. " Walking down the corridor, she seemed like anyone else. But through the years, Westfall said, "she knew when she was getting rundown. She would say, 'It's time for me to go see my doctors.' " The condition, Westfall said, "never defined her. It was something she dealt with every day, like brushing her teeth.
March 3, 2015 |
When she was 6, Julia Rae Schlucter was assigned a child-life specialist at Children's Hospital of Philadelphia, where she was being treated for a lung condition. Schlucter, 22, of Wayne, the newly crowned Miss Philadelphia, was diagnosed before birth with cystic fibrosis, a genetic lung disease that can be fatal. The specialist, Christina Brown, made sure Schlucter's needs as a child, and not just as a patient, were met, including having sufficient play and creative time. On Saturday, Brown, 59, was in the audience at the Kurtz Center for Performing Arts as Schlucter won the title.
December 28, 2014 |
Recently, a 1-year-old boy was brought to our practice for a routine checkup. He was a very healthy toddler and had been reaching all his milestones in both growth and development with absolute perfection. He had a flawless neonatal course, and all his lab work to date - including his newborn screen, complete blood count and lead test - were all within normal limits. His physical exam was completely normal until I found something ominous on his skin that would alter his life.
August 19, 2014 |
FOR THE Montelone family, "Surf's up" has become a rallying cry, as three of the family's five children are affected by cystic fibrosis. They are also part of a growing trend of families taking advantage of the health benefits that come with surfing. Hard to believe, but researchers have discovered that the saltwater in the ocean helps clear out the thick mucus that builds up in patients' lungs. "We have found the silver lining to it all and that has been through surfing," Paulette Montelone told the Associated Press while her five children were out in the water at San Onofre State Beach in California.
July 12, 2014 |
Marriage was always an unsettling next step for Missi Wright and Bill Carroll II. The Morton, Delaware County, couple, together for 11 years, often talked about it but were afraid of the consequences. A wedding meant that Wright's health insurance could be in jeopardy. Carroll didn't always have the kind of job and coverage that a wife like Wright would need. Cystic fibrosis had sapped Wright's ability to work regularly. Breathing was sometimes a struggle. Hospitalization, a regularity.
February 28, 2014 |
Emily Kramer-Golinkoff, a 29-year-old with big eyes and long straight hair, is like a lot of other single young women living in Center City: She tracks her exercise with a Fitbit, meets friends for dinner, and works as a new-media researcher. But unlike other twentysomethings, she devotes much of her day to an all-consuming mission: Extending her life. Kramer-Golinkoff's outward vitality masks the rapidly advancing state of a deadly disease, cystic fibrosis. With her lungs operating at 37 percent capacity, she undergoes an arduous three- to four-hour routine of breathing rituals and medications simply to face every day. With life expectancy for her illness in the 30s, Kramer-Golinkoff is throwing much of her waning energy into a philanthropy, Emily's Entourage, with a single mission - to find a cure that will save her life, as well as those of others with her rare form of the disease.
August 29, 2013 |
It has become a cliché to call critically ill children "fighters. " But there is no better word to describe Sarah Murnaghan, the girl who, with her equally indomitable parents, has battled cystic fibrosis, national lung allocation rules, and the rigors of double lung transplant surgery - twice. Early Tuesday morning, the 11-year-old left Children's Hospital of Philadelphia after more than six months, and arrived home in Newtown Square about 9:30 a.m., to the glee of her three younger siblings.
May 26, 2013 |
For the parents of Sarah Murnaghan, 10, who is dying of cystic fibrosis at Children's Hospital of Philadelphia, the bottom line seems heartbreakingly simple: She should be offered the first suitable lungs that become available, whether the donor is a child or adult. Instead, the Newtown Square couple say, organ-donation rules require adult lungs to be offered first to adults who are in less dire need than Sarah. There is nothing simple about this case or the rules governing transplants.