cystic fibrosis

What is Cystic Fibrosis?

Cystic fibrosis is a chronic disease in which the protein product of a defective gene produces thick and sticky mucus, which clogs the lungs and prevents the pancreas from helping the body break down food.

Symptoms of cystic fibrosis include:

Transitions: Honesty Is the Best Policy

Last time we talked about how to use choices and questions to help children learn responsibility at as early an age as possible. This week, we talk about an important part of asking questions and giving choices: making sure a child has enough information to make good choices.

Cystic Fibrosis Drug Kalydeco Shows Promise

Cystic Fibrosis affects 30,000 people in the U.S. It causes an imbalance of salt in the body, which affects the pancreas shortly after birth, impedes proper digestion, and causes airways to fill with mucus, leaving patients vulnerable to lung infections and other problems. Patients are often small and malnourished and tend to have overly salty skin due to sweat glands not working properly.

Advice on Transition from Pediatrics to Adult

After beginning our Transition article series, we received a question from a reader telling us about her experience going from a pediatric clinic to an adult clinic. This patient explains to us her common concern that so many others experience.  Lisa Greene responds with some very helpful advice.

Question:

Medical Professionals Share Transition Advice

Current research shows that an organized, methodical approach to transition is crucial. A. Kennedy et al. states: "Increasing evidence shows that adverse health consequences occur when inadequate transition arrangements are in place. Poor transition processes are increasingly recognized to have a significantly negative effect on morbidity and mortality in young adults."

Patients Share the Significance of Transition

Transferring from pediatrics into the adult medical system is a big step for families who have children with special needs. The medical care models are very different. Even prepared parents and young adults express shock at how different the two systems are. It's like jumping into a cold swimming pool. You might be mentally ready for cold water because you dipped in your big toe, but when you jump in, there's still a shock to your system. Some people appreciate the shock and call it "invigorating" while others can't wait to jump back out at the first possible chance!

Keeping Hope Alive When a Child Has Special Needs

Keeping Hope Alive When Your Child Has Special Needs

 I pull into the carpool lane to pick my kids up from school and am yet again touched by the sight of a service dog with a bright pink lunch pail hanging from her mouth as she trots alongside a young girl in a wheelchair.