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Cystic Fibrosis with Ileus News

Kalydeco Approval Widened for More Types of Cystic Fibrosis

Posted 18 May 2017 by

THURSDAY, May 18, 2017 – The U.S. Food and Drug Administration says it has expanded approval for the cystic fibrosis drug Kalydeco (ivacaftor) to include 33 mutations of the disease, up from the previous 10 mutations. In a media release, the agency said its decision was based on results of laboratory testing and previous clinical trials. "Many rare cystic fibrosis mutations have such small patient populations that clinical trial studies are not feasible," said Dr. Janet Woodcock, director of the agency's Center for Drug Evaluation and Research. "This challenge led us to using an alternative approach based on precision medicine, which made it possible to identify certain gene mutations that are likely to respond to Kalydeco." People with cystic fibrosis – roughly 30,000 of them in the United States – have a defective gene that causes mucus to become sticky and thick. Secretions gather ... Read more

Related support groups: Cystic Fibrosis, Orkambi, Kalydeco, Cystic Fibrosis with Ileus, Ivacaftor/lumacaftor, Ivacaftor

Cystic Fibrosis Survival Better in Canada Than in U.S.

Posted 14 Mar 2017 by

MONDAY, March 13, 2017 – People with cystic fibrosis are living longer than ever, but those in Canada live nearly 10 years longer than those in the United States, a new study finds. Cystic fibrosis is a genetic disease that affects the lungs and digestive tract. It causes the production of a thick, sticky mucus that clogs the lungs. This may cause life-threatening lung infections. People with cystic fibrosis also have difficulty properly breaking down and absorbing nutrients from food, the researchers explained. Between 2009 and 2013, the average Canadian with cystic fibrosis lived to just under 51 years. In the United States, someone with the lung disorder could expect to live an average of close to 41 years, the study found. Why the difference? Although the study didn't specifically look at the reasons behind the gap, possible reasons include diet, better access to lung transplants ... Read more

Related support groups: Cystic Fibrosis, Organ Transplant - Rejection Prophylaxis, Organ Transplant, Respiratory Tract Disease, Rejection Prophylaxis, Cystic Fibrosis with Ileus, Rejection Reversal

US Families Spend 1.5 Billion Hours Yearly on Kids With Special Health Needs

Posted 27 Dec 2016 by

TUESDAY, Dec. 27, 2016 – Families in the United States spend 1.5 billion hours each year providing home health care to their chronically ill or disabled children, a new study shows. The hours of health care these parents and other family members provide would cost $36 billion if performed by home health workers who received the going rate – or $12 billion if unskilled workers receiving minimum wage were hired, said senior researcher Dr. Mark Schuster. Parents of chronically ill children are asked these days to provide "the kind of care that, if they weren't there, the system would have to provide home health care or keep the children in the hospital longer," said Schuster, chief of general pediatrics at Boston Children's Hospital. He's also a professor of pediatrics at Harvard Medical School. These time-consuming and sometimes technical health care tasks can include maintaining ... Read more

Related support groups: Seizures, Muscular Dystrophy, Seizure Prevention, Head Injury, Cystic Fibrosis, Seizure Prophylaxis, Cerebral Palsy, Head Injury with Intracranial Hemorrhage, Duchenne Muscular Dystrophy, Spinal Muscular Atrophy, Head Injury w/ Intracranial Hemorrhage and Loss of Consciousness, Cystic Fibrosis with Ileus, Myotonia Congenita, Head Injury with Loss of Consciousness

Cystic Fibrosis Drug Seems OK for Preschoolers: Study

Posted 25 Jan 2016 by

MONDAY, Jan. 25, 2016 – The cystic fibrosis drug ivacaftor appears safe and effective for young children, a drug company-funded study suggests. "This was a small trial, but we are thrilled to see these results," said study leader Jane Davies, from the National Heart and Lung Institute at Imperial College London in England. "Ivacaftor is a potential new treatment to offer children aged 2 years and older with cystic fibrosis and a [specific gene mutation linked to the disease]. This novel therapy could substantially impact these children's lives, potentially opening the way to even greater progress in years to come." Cystic fibrosis is a life-threatening genetic disease that destroys the lungs and digestive system. More than 70,000 people worldwide have cystic fibrosis, the researchers said. One expert explained that ivacaftor has been considered a big advance in the treatment of the ... Read more

Related support groups: Cystic Fibrosis, Orkambi, Kalydeco, Cystic Fibrosis with Ileus, Ivacaftor/lumacaftor, Ivacaftor

Gene Therapy for Cystic Fibrosis Shows Some Promise in Study

Posted 2 Jul 2015 by

THURSDAY, July 2, 2015 – Gene therapy for cystic fibrosis has for the first time shown slight but significant benefit on lung function, new British research reveals. In a randomized trial, patients inhaled molecules of DNA that aimed to replace the defective gene responsible for cystic fibrosis with a healthy, working copy of the gene in the lungs. "Patients who received the gene therapy showed a significant, if modest, benefit in tests of lung function compared with the placebo group, and there were no safety concerns," study senior author Eric Alton of the National Heart and Lung Institute at Imperial College London, said in a news release fromThe Lancet Respiratory Medicine, which published the study. Even though the effect was "inconsistent, with some patients responding better than others, the results are encouraging," Alton said. Cystic fibrosis is a rare, inherited respiratory ... Read more

Related support groups: Cystic Fibrosis, Cystic Fibrosis with Ileus

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