MyCysticFibrosisTeam

02/08/2018

"In early childhood, pancreatic insufficiency is the most prominent effect of CF."
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goes live-->https://goo.gl/KtFRHv

What is cystic fibrosis? Cystic fibrosis is an autosomal recessive disorder involving the cystic fibrosis transmembrane conductance regulator (CFTR) gene, wh...

01/08/2018

"Having CF doesn’t mean that your child’s experience of life, including school, will be the same as that of any other child with the condition."
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goes live-->https://goo.gl/KtFRHv

Information for parents of children with cystic fibrosis about to start preschool or primary school

31/07/2018

"Don’t think that transitioning means everything is going to change."
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goes live-->https://goo.gl/KtFRHv

CHOP’s Cystic Fibrosis Center was like a second home for Devon growing up. Now 21, she offers advice to other CF patients making the transition to adult care.

29/07/2018

"Many medications are temperature-sensitive, so keep all drugs at the recommended temperature, away from light and sources of heat or cold."
Visit MyCysticFibrosisTeam to get an invite when the community
goes live-->https://goo.gl/KtFRHv

27/07/2018

"A good adult CF program puts you first."

Visit MyCysticFibrosisTeam to get an invite when the community
goes live-->https://goo.gl/KtFRHv

You should be the leader of your CF team

25/07/2018

"I walked away feeling a little sad and disappointed that CF had leaked into the time I tried to set aside just for me."
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goes live-->https://goo.gl/KtFRHv

After a massage gone wrong, columnist Janeil Whitworth expresses frustration at times that her cystic fibrosis cough makes "normal experiences" anything but.

23/07/2018

"The best thing my CF nurse did, which surprised me at the time, was mention that if I ever wanted to talk positions that made it easier to breathe she could help."
Visit MyCysticFibrosisTeam to get an invite when the community
goes live-->https://goo.gl/KtFRHv

For some people with CF, having s*x can come with physical discomfort, aggravations and pain. Fortunately, some practical tips and advice can help both men and women with CF fully enjoy their s*x lives.

18/07/2018

"Carrier testing allows parents to find out what their chances of having a child with cystic fibrosis are to help inform important family planning decisions."
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goes live-->https://goo.gl/KtFRHv

Genetic (or carrier) testing not only plays a key role in the diagnosis of cystic fibrosis, but testing also allows parents to find out what their chances of having a child with CF are to help inform important family planning decisions.

16/07/2018

Join the social network for people with and find support today:https://goo.gl/KtFRHv

14/07/2018

"Many different factors, such as age of diagnosis, can affect an individual's health and the course of the disease."
Visit MyCysticFibrosisTeam to get an invite when the community goes live-->https://goo.gl/KtFRHv

Learn about cystic fibrosis, a genetic disorder that affects the lungs, pancreas, and other organs, and how to treat and live with this chronic disease.

11/07/2018

"CF is a chronic, life-long genetic disease affecting the lungs, digestive system and overall growth. People with CF have thickened secretions which clog the lungs and cause breathing problems. "
Visit MyCysticFibrosisTeam to get an invite when the community goes live-->https://goo.gl/KtFRHv

Imagine taking your 4-year-old daughter to the pediatrician for her well child visit, where you expect to hear the usual “she’s doing great – see you next year!” This time, though, your doctor is throwing out words such as “speech delay,” “unusual behavior” and “lack of eye contact...

11/07/2018

Get an EARLY invite!
The social network for people living with cystic fibrosis. Check it out:https://goo.gl/KtFRHv