tag:blogger.com,1999:blog-81460055705510906402024-02-19T06:41:04.020-08:00Cystic Fibrosis: Video FavoritesChild Onlinehttp://www.blogger.com/profile/07237159759398811134noreply@blogger.comBlogger31125tag:blogger.com,1999:blog-8146005570551090640.post-50906267104191445222011-09-11T14:14:00.000-07:002011-09-11T14:14:48.227-07:00Joan (50) Life with Cystic Fibrosis<div dir="ltr" style="text-align: left;" trbidi="on">Statistics about life expectancy in cystic fibrosis (which are generally listed as being in the 30s) are a mathematical average - usually the <a href="http://www.mathsisfun.com/median.html">median average</a> rather than the "most common" age. Statistics such as these were never designed to predict the length of life for an individual person with CF. Instead they show trends in cystic fibrosis - and these trends show life expectancy is improving due to research into new treatments, for example. <br />
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One such person who shows statistics are just mathematical calculations is sports enthusiast and CF Foundation volunteer, Joan Finnegan Brooks (50). In this video Joan talks about life as a CF adult and growing up with cystic fibrosis. <br />
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<iframe allowfullscreen="" frameborder="0" height="344" src="http://www.youtube.com/embed/x1YjiUqUbIA?fs=1" width="425"></iframe><br />
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<b>Cystic Fibrosis Resources</b><br />
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<iframe frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="http://rcm.amazon.com/e/cm?t=chonbl-20&o=1&p=8&l=as1&asins=B002C61FG8&nou=1&ref=qf_sp_asin_til&fc1=000000&IS2=1&lt1=_blank&m=amazon&lc1=0000FF&bc1=000000&bg1=FFFFFF&f=ifr" style="height: 240px; width: 120px;"></iframe> <iframe frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="http://rcm.amazon.com/e/cm?t=chonbl-20&o=1&p=8&l=as1&asins=B002YM796K&nou=1&ref=qf_sp_asin_til&fc1=000000&IS2=1&lt1=_blank&m=amazon&lc1=0000FF&bc1=000000&bg1=FFFFFF&f=ifr" style="height: 240px; width: 120px;"></iframe> <iframe frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="http://rcm.amazon.com/e/cm?t=chonbl-20&o=1&p=8&l=as1&asins=059547201X&nou=1&ref=qf_sp_asin_til&fc1=000000&IS2=1&lt1=_blank&m=amazon&lc1=0000FF&bc1=000000&bg1=FFFFFF&f=ifr" style="height: 240px; width: 120px;"></iframe></div>Child Onlinehttp://www.blogger.com/profile/07237159759398811134noreply@blogger.com0tag:blogger.com,1999:blog-8146005570551090640.post-45857306980241658372011-09-04T14:39:00.000-07:002011-09-04T14:39:27.857-07:00What is Cystic Fibrosis? The "Grey Zone"<div dir="ltr" style="text-align: left;" trbidi="on">This is a very short video (with Pediatric Pulmonologist - Alfin G. Vicencio, MD) about the cystic fibrosis "grey zone" and how this complicates CF diagnosis. The "grey zone" relates to patients who do not present with the typical symptoms of cystic fibrosis but still have illness creating mutations on their <span class="st">cystic fibrosis transmembrane conductance regulator (i.e. the cystic fibrosis gene - also called the CFTR gene). This leads to atypical forms of cystic fibrosis and extends the boundaries of what "cystic fibrosis" is and how it affects people. </span><br />
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<iframe allowfullscreen="" frameborder="0" height="295" src="http://www.youtube.com/embed/xbkEomC1DO8?fs=1" width="480"></iframe><br />
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<b>Cystic Fibrosis Resources</b><br />
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<iframe frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="http://rcm.amazon.com/e/cm?t=chonbl-20&o=1&p=8&l=as1&asins=0781741521&nou=1&ref=tf_til&fc1=000000&IS2=1&lt1=_blank&m=amazon&lc1=0000FF&bc1=000000&bg1=FFFFFF&f=ifr" style="height: 240px; width: 120px;"></iframe> <iframe frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="http://rcm.amazon.com/e/cm?t=chonbl-20&o=1&p=8&l=as1&asins=B000GWPT4E&nou=1&ref=tf_til&fc1=000000&IS2=1&lt1=_blank&m=amazon&lc1=0000FF&bc1=000000&bg1=FFFFFF&f=ifr" style="height: 240px; width: 120px;"></iframe> <iframe frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="http://rcm.amazon.com/e/cm?t=chonbl-20&o=1&p=8&l=as1&asins=0879696117&nou=1&ref=tf_til&fc1=000000&IS2=1&lt1=_blank&m=amazon&lc1=0000FF&bc1=000000&bg1=FFFFFF&f=ifr" style="height: 240px; width: 120px;"></iframe></div>Child Onlinehttp://www.blogger.com/profile/07237159759398811134noreply@blogger.com0tag:blogger.com,1999:blog-8146005570551090640.post-45739175968255136072011-08-28T16:23:00.000-07:002011-08-28T16:23:42.823-07:00Conversations with Cystic Fibrosis Mums<div dir="ltr" style="text-align: left;" trbidi="on">Mums talk about daily life and parenting when you have a child or young adult with cystic fibrosis, as well as the option of organ transplantation in later years. The video also shows <a href="http://cfvideofavorites.blogspot.com/search/label/Power%20of%20Two"><span class="st">Isabel Stenzel Byrnes and Anabel </span>Stenzel</a>, authors of <a href="http://www.amazon.com/Power-Two-Triumph-Cystic-Fibrosis/dp/0826217540?ie=UTF8&tag=chonbl-20&link_code=btl&camp=213689&creative=392969" target="_blank">The Power of Two</a><img alt="" border="0" height="1" src="http://www.assoc-amazon.com/e/ir?t=chonbl-20&l=btl&camp=213689&creative=392969&o=1&a=0826217540" style="border: medium none ! important; margin: 0px ! important; padding: 0px ! important;" width="1" /> on their visit to Japan. <br />
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<iframe allowfullscreen="" frameborder="0" height="295" src="http://www.youtube.com/embed/LBA3qzAKGZo?fs=1" width="480"></iframe><br />
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<span style="font-weight: bold;">Cystic Fibrosis Resources</span><br />
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<iframe frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="http://rcm.amazon.com/e/cm?t=chonbl-20&o=1&p=8&l=as1&asins=B004HUDFOW&nou=1&ref=tf_til&fc1=000000&IS2=1&lt1=_blank&m=amazon&lc1=0000FF&bc1=000000&bg1=FFFFFF&f=ifr" style="height: 240px; width: 120px;"></iframe> <iframe frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="http://rcm.amazon.com/e/cm?t=chonbl-20&o=1&p=8&l=as1&asins=1591470412&nou=1&ref=tf_til&fc1=000000&IS2=1&lt1=_blank&m=amazon&lc1=0000FF&bc1=000000&bg1=FFFFFF&f=ifr" style="height: 240px; width: 120px;"></iframe> <iframe frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="http://rcm.amazon.com/e/cm?t=chonbl-20&o=1&p=8&l=as1&asins=0781741521&nou=1&ref=tf_til&fc1=000000&IS2=1&lt1=_blank&m=amazon&lc1=0000FF&bc1=000000&bg1=FFFFFF&f=ifr" style="height: 240px; width: 120px;"></iframe></div>Child Onlinehttp://www.blogger.com/profile/07237159759398811134noreply@blogger.com0tag:blogger.com,1999:blog-8146005570551090640.post-47237494526592867042011-08-21T16:47:00.000-07:002011-08-21T16:47:39.932-07:00Gene Therapy for Cystic Fibrosis<div dir="ltr" style="text-align: left;" trbidi="on">Professor Brandon Wainwright explains gene therapy for cystic fibrosis. It is a bit out of date in regards to current research but it does include useful information about the potential benefits and limitations of genetic therapy.<br />
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<iframe allowfullscreen="" frameborder="0" height="344" src="http://www.youtube.com/embed/ztCnd-mSsG0?fs=1" width="425"></iframe><br />
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<b>Cystic Fibrosis Resources</b><br />
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<iframe frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="http://rcm.amazon.com/e/cm?t=chonbl-20&o=1&p=8&l=as1&asins=0879696141&nou=1&ref=tf_til&fc1=000000&IS2=1&lt1=_blank&m=amazon&lc1=0000FF&bc1=000000&bg1=FFFFFF&f=ifr" style="height: 240px; width: 120px;"></iframe> <iframe frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="http://rcm.amazon.com/e/cm?t=chonbl-20&o=1&p=8&l=as1&asins=0879696117&nou=1&ref=tf_til&fc1=000000&IS2=1&lt1=_blank&m=amazon&lc1=0000FF&bc1=000000&bg1=FFFFFF&f=ifr" style="height: 240px; width: 120px;"></iframe> <iframe frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="http://rcm.amazon.com/e/cm?t=chonbl-20&o=1&p=8&l=as1&asins=B001DTD0H2&nou=1&ref=tf_til&fc1=000000&IS2=1&lt1=_blank&m=amazon&lc1=0000FF&bc1=000000&bg1=FFFFFF&f=ifr" style="height: 240px; width: 120px;"></iframe></div>Child Onlinehttp://www.blogger.com/profile/07237159759398811134noreply@blogger.com0tag:blogger.com,1999:blog-8146005570551090640.post-15733941209858077972011-08-14T17:23:00.000-07:002011-08-14T17:23:50.508-07:00Cystic Fibrosis Documentary<div dir="ltr" style="text-align: left;" trbidi="on">A short but comprehensive documentary about cystic fibrosis covering topics such as symptoms, genetics, treatments and the perspective of adults with CF. More information about cystic fibrosis can be found on the <a href="http://www.mayoclinic.com/health/cystic-fibrosis/DS00287">Mayo Clinic</a> and <a href="http://kidshealth.org/parent/medical/lungs/cf.html">Kids Health</a> websites (there is also information especially written for <a href="http://kidshealth.org/teen/diseases_conditions/digestive/cystic_fibrosis.html">teens</a> and <a href="http://kidshealth.org/kid/health_problems/heart/cystic_fibrosis.html">kids</a>).<br />
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<iframe allowfullscreen="" frameborder="0" height="344" src="http://www.youtube.com/embed/l0dDhKFk2HU?fs=1" width="425"></iframe><br />
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<b>Cystic Fibrosis Resources</b><br />
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<iframe frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="http://rcm.amazon.com/e/cm?t=chonbl-20&o=1&p=8&l=as1&asins=B000R9DAWE&nou=1&ref=tf_til&fc1=000000&IS2=1&lt1=_blank&m=amazon&lc1=0000FF&bc1=000000&bg1=FFFFFF&f=ifr" style="height: 240px; width: 120px;"></iframe> <iframe frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="http://rcm.amazon.com/e/cm?t=chonbl-20&o=1&p=8&l=as1&asins=B003VCN2NG&nou=1&ref=tf_til&fc1=000000&IS2=1&lt1=_blank&m=amazon&lc1=0000FF&bc1=000000&bg1=FFFFFF&f=ifr" style="height: 240px; width: 120px;"></iframe> <iframe frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="http://rcm.amazon.com/e/cm?t=chonbl-20&o=1&p=8&l=as1&asins=B002FB63C6&nou=1&ref=tf_til&fc1=000000&IS2=1&lt1=_blank&m=amazon&lc1=0000FF&bc1=000000&bg1=FFFFFF&f=ifr" style="height: 240px; width: 120px;"></iframe></div>Child Onlinehttp://www.blogger.com/profile/07237159759398811134noreply@blogger.com0tag:blogger.com,1999:blog-8146005570551090640.post-37820935496089632102011-08-10T19:23:00.000-07:002011-08-10T19:23:01.121-07:00What is Bronchiectasis?<div dir="ltr" style="text-align: left;" trbidi="on"><a href="http://www.patient.co.uk/health/Bronchiectasis.htm">Bronchiectasis</a> (pronounced bron-kee-ek'-tas-is) is a condition often associated with cystic fibrosis. Bronchiectasis is caused by recurrent (i.e. repeated) inflammation or infection of the airways in the lungs. This video explains what bronchiectasis is and shows the related changes in the affected area of the lung(s). <br />
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<iframe allowfullscreen="" frameborder="0" height="344" src="http://www.youtube.com/embed/yktCAd2MyR4?fs=1" width="425"></iframe><br />
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<b>Cystic Fibrosis Resources</b><br />
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<iframe align="left" frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="http://rcm.amazon.com/e/cm?t=chonbl-20&o=1&p=8&l=bpl&asins=B0013Y97PG&fc1=000000&IS2=1&lt1=_blank&m=amazon&lc1=0000FF&bc1=000000&bg1=FFFFFF&f=ifr" style="height: 245px; padding-right: 10px; padding-top: 5px; width: 131px;"></iframe><iframe align="left" frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="http://rcm.amazon.com/e/cm?t=chonbl-20&o=1&p=8&l=bpl&asins=0060546549&fc1=000000&IS2=1&lt1=_blank&m=amazon&lc1=0000FF&bc1=000000&bg1=FFFFFF&f=ifr" style="height: 245px; padding-right: 10px; padding-top: 5px; width: 131px;"></iframe><iframe align="left" frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="http://rcm.amazon.com/e/cm?t=chonbl-20&o=1&p=8&l=bpl&asins=0756628652&fc1=000000&IS2=1&lt1=_blank&m=amazon&lc1=0000FF&bc1=000000&bg1=FFFFFF&f=ifr" style="height: 245px; padding-right: 10px; padding-top: 5px; width: 131px;"></iframe></div>Child Onlinehttp://www.blogger.com/profile/07237159759398811134noreply@blogger.com0tag:blogger.com,1999:blog-8146005570551090640.post-1229158193451899852011-07-24T15:06:00.000-07:002011-07-24T15:06:11.836-07:00Cystic Fibrosis Classic - "Breathe"<div dir="ltr" style="text-align: left;" trbidi="on">This song has become a classic in CF related music. "Breathe" was written by Matt Scales and is performed in this video by three singers with cystic fibrosis - Tess, Josh and Rose. Matt lost his life to cystic fibrosis in 2007. He was 27 years old. <br />
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The three videos include interviews with the singers, the making of the "Breathe" video and the performance. <br />
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<iframe allowfullscreen="" frameborder="0" height="295" src="http://www.youtube.com/embed/-bXNc0FkqZw?rel=0" width="480"></iframe><br />
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<span style="font-size: large;"><b>The Making of "Breathe"</b></span><br />
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<iframe allowfullscreen="" frameborder="0" height="295" src="http://www.youtube.com/embed/v-goYAveG6o?rel=0" width="480"></iframe><br />
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<span style="font-size: large;"><b>Interviews with the Singers of "Breathe"</b></span><br />
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<iframe allowfullscreen="" frameborder="0" height="295" src="http://www.youtube.com/embed/BxMeZOtMhFs?fs=1" width="480"></iframe><br />
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<b>Cystic Fibrosis Resources</b><br />
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<iframe frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="http://rcm.amazon.com/e/cm?t=chonbl-20&o=1&p=8&l=as1&asins=B002FB63C6&nou=1&ref=tf_til&fc1=000000&IS2=1&lt1=_blank&m=amazon&lc1=0000FF&bc1=000000&bg1=FFFFFF&f=ifr" style="height: 240px; width: 120px;"></iframe><iframe frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="http://rcm.amazon.com/e/cm?t=chonbl-20&o=1&p=8&l=as1&asins=0786888695&nou=1&ref=tf_til&fc1=000000&IS2=1&lt1=_blank&m=amazon&lc1=0000FF&bc1=000000&bg1=FFFFFF&f=ifr" style="height: 240px; width: 120px;"></iframe><iframe frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="http://rcm.amazon.com/e/cm?t=chonbl-20&o=1&p=8&l=as1&asins=B000R9DAWE&nou=1&ref=tf_til&fc1=000000&IS2=1&lt1=_blank&m=amazon&lc1=0000FF&bc1=000000&bg1=FFFFFF&f=ifr" style="height: 240px; width: 120px;"></iframe></div>Child Onlinehttp://www.blogger.com/profile/07237159759398811134noreply@blogger.com0tag:blogger.com,1999:blog-8146005570551090640.post-51370238928014211292011-07-17T16:09:00.000-07:002011-07-17T16:09:00.161-07:00CF for New Parents, Friends or Family<div dir="ltr" style="text-align: left;" trbidi="on">Parents, children and cystic fibrosis professionals from the Children's Hospital at Westmead's Cystic Fibrosis Clinic talk about life with CF. The information is simple but comprehensive making it a great video for families with a child newly diagnosed with CF or friends and family who may not know much about cystic fibrosis. The video explains the basics about CF genetics, what cystic fibrosis is and some of the treatments needed.<br />
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If you know of any useful online resources for parents who have just had a child diagnosed with cystic fibrosis (or family and friends) feel free to let us know in the comments :) <br />
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<iframe allowfullscreen="" frameborder="0" height="344" src="http://www.youtube.com/embed/5DbwMMXRpgk?fs=1" width="425"></iframe><br />
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<b>Cystic Fibrosis Resources</b><br />
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<iframe frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="http://rcm.amazon.com/e/cm?t=chonbl-20&o=1&p=8&l=as1&asins=0781741521&nou=1&ref=qf_sp_asin_til&fc1=000000&IS2=1&lt1=_blank&m=amazon&lc1=0000FF&bc1=000000&bg1=FFFFFF&f=ifr" style="height: 240px; width: 120px;"></iframe> <iframe frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="http://rcm.amazon.com/e/cm?t=chonbl-20&o=1&p=8&l=as1&asins=1891383094&nou=1&ref=qf_sp_asin_til&fc1=000000&IS2=1&lt1=_blank&m=amazon&lc1=0000FF&bc1=000000&bg1=FFFFFF&f=ifr" style="height: 240px; width: 120px;"></iframe> <iframe frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="http://rcm.amazon.com/e/cm?t=chonbl-20&o=1&p=8&l=as1&asins=B004HUDFOW&nou=1&ref=tf_til&fc1=000000&IS2=1&lt1=_blank&m=amazon&lc1=0000FF&bc1=000000&bg1=FFFFFF&f=ifr" style="height: 240px; width: 120px;"></iframe></div>Child Onlinehttp://www.blogger.com/profile/07237159759398811134noreply@blogger.com0tag:blogger.com,1999:blog-8146005570551090640.post-19163884455938848562011-07-09T16:23:00.000-07:002011-07-09T16:23:30.113-07:00Cystic Fibrosis Author Leah Orr<div dir="ltr" style="text-align: left;" trbidi="on"><div dir="ltr" style="text-align: left;" trbidi="on">A short documentary about Leah Orr the author of two children's books about cystic fibrosis - "<a href="http://www.amazon.com/Kyles-First-Crush-Leah-Orr/dp/1425957331?ie=UTF8&tag=chonbl-20&link_code=btl&camp=213689&creative=392969" target="_blank">Kyle's First Crush</a><img alt="" border="0" height="1" src="http://www.assoc-amazon.com/e/ir?t=chonbl-20&l=btl&camp=213689&creative=392969&o=1&a=1425957331" style="border: medium none ! important; margin: 0px ! important; padding: 0px ! important;" width="1" />" and "<a href="http://www.amazon.com/Kyles-First-Playdate-Leah-Orr/dp/1434317153?ie=UTF8&tag=chonbl-20&link_code=btl&camp=213689&creative=392969" target="_blank">Kyle's First Playdate</a><img alt="" border="0" height="1" src="http://www.assoc-amazon.com/e/ir?t=chonbl-20&l=btl&camp=213689&creative=392969&o=1&a=1434317153" style="border: medium none ! important; margin: 0px ! important; padding: 0px ! important;" width="1" />". Leah's daughter Ashley has cystic fibrosis. <br />
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<i>"Upon learning that her daughter was diagnosed with Cystic Fibrosis (while still in the womb) Orr knew she wanted to do something special. With some input from her mother and three daughters, it was decided that she'd write books to benefit the Cystic Fibrosis (CF) Foundation."</i><br />
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<i>From the <b><a href="http://www.amazon.com/gp/redirect.html?ie=UTF8&location=http%3A%2F%2Fwww.amazon.com%2Fgp%2Fentity%2FLeah-Orr%2FB002BLWXFG%23&tag=chonbl-20&linkCode=ur2&camp=1789&creative=390957">Amazon Leah Orr Biography Page</a></b></i><b><img alt="" border="0" height="1" src="http://www.assoc-amazon.com/e/ir?t=chonbl-20&l=ur2&o=1" style="border: medium none ! important; margin: 0px ! important;" width="1" /></b><br />
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You can also read Leah's story in the Cystic Fibrosis Foundation's <b><a href="http://www.cff.org/LivingWithCF/InTheSpotlight/PreviouslyFeatured/9817.cfm">"In the Spotlight"</a></b><br />
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<iframe allowfullscreen="" frameborder="0" height="344" src="http://www.youtube.com/embed/mEo8Ws9_Tmw?fs=1" width="425"></iframe></div><br />
<b>Leah Orr's Books</b><br />
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<iframe frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="http://rcm.amazon.com/e/cm?lt1=_blank&bc1=000000&IS2=1&nou=1&bg1=FFFFFF&fc1=000000&lc1=0000FF&t=chonbl-20&o=1&p=8&l=as1&m=amazon&f=ifr&ref=tf_til&asins=1425957331" style="height: 240px; width: 120px;"></iframe> <iframe frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="http://rcm.amazon.com/e/cm?lt1=_blank&bc1=000000&IS2=1&nou=1&bg1=FFFFFF&fc1=000000&lc1=0000FF&t=chonbl-20&o=1&p=8&l=as1&m=amazon&f=ifr&ref=tf_til&asins=1434317153" style="height: 240px; width: 120px;"></iframe></div>Child Onlinehttp://www.blogger.com/profile/07237159759398811134noreply@blogger.com0tag:blogger.com,1999:blog-8146005570551090640.post-64308110496843846152011-07-04T22:24:00.000-07:002011-07-04T22:24:59.353-07:00Claire - A Cystic Fibrosis Story<div dir="ltr" style="text-align: left;" trbidi="on">Claire (6), her brother Kevin (8) and their parents talk about family life with cystic fibrosis. The video focuses on normal day-to-day life with cystic fibrosis, something which is important for awareness as CF is a 24 hours a day, 7 days a week medical condition.<br />
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If you know of other great videos showing more about normal day-to-day life with CF please share them in our comments. <br />
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<iframe allowfullscreen="" frameborder="0" height="295" src="http://www.youtube.com/embed/4KHb33WUQEU?fs=1" width="480"></iframe><br />
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<span style="font-weight: bold;">Cystic Fibrosis Resources</span><br />
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<iframe frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="http://rcm.amazon.com/e/cm?t=chonbl-20&o=1&p=8&l=as1&asins=0945354495&nou=1&ref=tf_til&fc1=000000&IS2=1&lt1=_blank&m=amazon&lc1=0000FF&bc1=000000&bg1=FFFFFF&f=ifr" style="height: 240px; width: 120px;"></iframe> <iframe frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="http://rcm.amazon.com/e/cm?t=chonbl-20&o=1&p=8&l=as1&asins=B000OS2OMK&nou=1&ref=tf_til&fc1=000000&IS2=1&lt1=_blank&m=amazon&lc1=0000FF&bc1=000000&bg1=FFFFFF&f=ifr" style="height: 240px; width: 120px;"></iframe> <iframe frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="http://rcm.amazon.com/e/cm?t=chonbl-20&o=1&p=8&l=as1&asins=B000FBF158&nou=1&ref=tf_til&fc1=000000&IS2=1&lt1=_blank&m=amazon&lc1=0000FF&bc1=000000&bg1=FFFFFF&f=ifr" style="height: 240px; width: 120px;"></iframe><br />
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</div>Child Onlinehttp://www.blogger.com/profile/07237159759398811134noreply@blogger.com0tag:blogger.com,1999:blog-8146005570551090640.post-86948727377593717112011-07-01T17:59:00.000-07:002011-07-16T17:13:33.977-07:00Eva Markvoort: Blogger with CF<div dir="ltr" style="text-align: left;" trbidi="on">Eva Markvoort talks about CF, her double lung transplant, chronic rejection and hope. Eva died in 2010 at the age of 25. Her importance as a blogger lead to the CNN article <a href="http://edition.cnn.com/2010/HEALTH/04/27/blog.terminal.illness/index.html">Death at 25: Blogging the end of a life</a>.<br />
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Eva, from British Columbia, Canada, became <a href="http://en.wikipedia.org/wiki/Eva_Markvoort">well known</a> through her blog <a href="http://65redroses.livejournal.com/">65 Red Roses: Thoughts on Living with CF</a> and the documentary about her - <a href="http://www.65redroses.com/">65 Redroses</a>. Her blogging name comes from the now "CF lore" story of a young child who could not pronounce cystic fibrosis - instead calling it 65 roses. <br />
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<iframe allowfullscreen="" frameborder="0" height="295" src="http://www.youtube.com/embed/4N9GH8ydL_Q?fs=1" width="480"></iframe><br />
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<b>Eva's Final Video</b><br />
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<iframe allowfullscreen="" frameborder="0" height="295" src="http://www.youtube.com/embed/viNEhFQe5o8?rel=0" width="480"></iframe></div>Child Onlinehttp://www.blogger.com/profile/07237159759398811134noreply@blogger.com0tag:blogger.com,1999:blog-8146005570551090640.post-12524687311179812502011-07-01T17:55:00.000-07:002011-07-01T17:55:05.477-07:00"Power of Two" Authors - The Stenzel Twins<div dir="ltr" style="text-align: left;" trbidi="on">One of the few full feature videos (45 minutes) focusing on two cystic fibrosis authors - sisters Anabel Stenzel and Isabel Stenzel Byrnes. The sisters are the authors of <a href="http://www.amazon.com/Power-Two-Triumph-Cystic-Fibrosis/dp/0826217540?ie=UTF8&tag=chonbl-20&link_code=btl&camp=213689&creative=392969" target="_blank">The Power of Two: A Twin Triumph over Cystic Fibrosis</a><img alt="" border="0" height="1" src="http://www.assoc-amazon.com/e/ir?t=chonbl-20&l=btl&camp=213689&creative=392969&o=1&a=0826217540" style="border: medium none ! important; margin: 0px ! important; padding: 0px ! important;" width="1" />. This is the first memoir to explore the life of twins living with cystic fibrosis and has inspired the movie - <a href="http://www.thepoweroftwomovie.com/">The Power of Two</a>. <br />
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<iframe allowfullscreen="" frameborder="0" height="295" src="http://www.youtube.com/embed/5IYlPla7i7Y?fs=1" width="480"></iframe><br />
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<b>Anabel Stenzel and Isabel Stenzel Byrnes' Book</b><br />
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<iframe frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="http://rcm.amazon.com/e/cm?t=chonbl-20&o=1&p=8&l=as1&asins=0826217540&nou=1&ref=tf_til&fc1=000000&IS2=1&lt1=_blank&m=amazon&lc1=0000FF&bc1=000000&bg1=FFFFFF&f=ifr" style="height: 240px; width: 120px;"></iframe></div>Child Onlinehttp://www.blogger.com/profile/07237159759398811134noreply@blogger.com0tag:blogger.com,1999:blog-8146005570551090640.post-63977138509377147542011-06-28T13:34:00.000-07:002011-06-28T13:34:06.955-07:00Breathing Life Awards<div dir="ltr" style="text-align: left;" trbidi="on">Interviews with 9 individuals aged between 9 and 38 years for the CF Trust's 2009 Breathing Life Awards. The Breathing Life Awards recognise and celebrate the achievements and spirit of those living with Cystic Fibrosis in the areas of sport, academics and artistic endeavour.<br />
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<span style="color: #073763; font-size: small;"><b>The 2009 Winners List: </b></span><br />
<ul style="text-align: left;"><li><b>Junior Sport: </b>Cameron Saltmer (16) Dover, Kent<b> </b></li>
<li><b>Artistic Award: </b>Chris Benbow (21) Crewe<b> </b></li>
<li><b>Adult Fighting Spirit: </b>Sarah Elsbury (26) Norwich, Norfolk<b> </b></li>
<li><b>Fundraising Award: </b>Jodie Symington (24) Hebburn, Tyne and Wear<b> </b></li>
<li><b>Academic Life: </b>Nigel Brooke (33) Besseccar, Doncaster<b> </b></li>
<li><b>Adult Sport: </b>Chris Goulden (19) Poole, Dorset<b> </b></li>
<li><b>Junior Fighting Spirit Award:</b>Sam Roonan (10) Havant, Hampshire</li>
</ul><div style="text-align: left;"><br />
</div><b>Junior Sport Award </b><br />
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<iframe allowfullscreen="" frameborder="0" height="295" src="http://www.youtube.com/embed/qCMspV5AR2M?fs=1" width="480"></iframe><br />
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<b>Academic Life Award</b><br />
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<iframe allowfullscreen="" frameborder="0" height="295" src="http://www.youtube.com/embed/D9UyxqSVir4?fs=1" width="480"></iframe><br />
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<b>Artistic Award</b><br />
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<iframe allowfullscreen="" frameborder="0" height="295" src="http://www.youtube.com/embed/HhoRzKwZXr0?fs=1" width="480"></iframe><br />
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<b>Cystic Fibrosis Resources</b><br />
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<iframe frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="http://rcm.amazon.com/e/cm?t=chonbl-20&o=1&p=8&l=as1&asins=B000THEAOG&nou=1&ref=tf_til&fc1=000000&IS2=1&lt1=_blank&m=amazon&lc1=0000FF&bc1=000000&bg1=FFFFFF&f=ifr" style="height: 240px; width: 120px;"></iframe> <iframe frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="http://rcm.amazon.com/e/cm?t=chonbl-20&o=1&p=8&l=as1&asins=081084821X&nou=1&ref=tf_til&fc1=000000&IS2=1&lt1=_blank&m=amazon&lc1=0000FF&bc1=000000&bg1=FFFFFF&f=ifr" style="height: 240px; width: 120px;"></iframe> <iframe frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="http://rcm.amazon.com/e/cm?t=chonbl-20&o=1&p=8&l=as1&asins=B002FB63C6&nou=1&ref=tf_til&fc1=000000&IS2=1&lt1=_blank&m=amazon&lc1=0000FF&bc1=000000&bg1=FFFFFF&f=ifr" style="height: 240px; width: 120px;"></iframe></div>Child Onlinehttp://www.blogger.com/profile/07237159759398811134noreply@blogger.com0tag:blogger.com,1999:blog-8146005570551090640.post-36242968387496306762011-06-25T14:48:00.000-07:002011-06-25T14:48:55.677-07:00Morganko - Highlights from Joshland<div dir="ltr" style="text-align: left;" trbidi="on"><div dir="ltr" style="text-align: left;" trbidi="on">Here's the coolest puppet on the planet who "make kids smile and teach[es] them the basics about Cystic Fibrosis every once in a while" <i>(from the Joshland blog).</i><br />
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Morganko is the star, sorry Josh, of a mini-series especially for kids with CF. He makes orange fuzz fashionable as he arrives in Joshland, finds a new use for 'the vest', races in the IV Pole 500 and more........<br />
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Here's a selection from Morganko's adventures. To see the rest you'll need to visit him in <b><a href="http://www.welcometojoshland.com/search/label/Moganko">Joshland</a></b>. <br />
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<b>When Moganko Met Joshy </b><br />
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<iframe allowfullscreen="" frameborder="0" height="295" src="http://www.youtube.com/embed/HIiOLntuNiQ?rel=0" width="480"></iframe><br />
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<b>The "Great CF Check-Up" Happy Dance</b><br />
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<iframe allowfullscreen="" frameborder="0" height="295" src="http://www.youtube.com/embed/5wdkNoAL7zQ?fs=1" width="480"></iframe><br />
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<b>Orange Juice Shake Up</b><br />
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<iframe allowfullscreen="" frameborder="0" height="295" src="http://www.youtube.com/embed/A7HMpE_f63A?rel=0" width="480"></iframe><br />
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<b>Morganko Tries a Pulmonary Function Test</b><br />
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<iframe allowfullscreen="" frameborder="0" height="295" src="http://www.youtube.com/embed/zXiGkbZx_Yg?rel=0" width="480"></iframe><br />
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<b>The Hospital Edition</b><br />
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<iframe allowfullscreen="" frameborder="0" height="295" src="http://www.youtube.com/embed/cju3Tw14CJg?rel=0" width="480"></iframe></div><br />
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<b>I.V Pole 500</b><br />
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<iframe allowfullscreen="" frameborder="0" height="295" src="http://www.youtube.com/embed/r_q4vkG-n-c?rel=0" width="480"></iframe><br />
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<a href="http://www.youtube.com/user/welcometojoshland/"><img src="http://3.bp.blogspot.com/_SDSe7BvrK5s/TF3O1q4d8eI/AAAAAAAAAck/xtwDAFg3g28/s320/Joshlandyoutubebuttonwhite.gif" /></a><a href="http://www.youtube.com/user/welcometojoshland/"><img src="http://4.bp.blogspot.com/_SDSe7BvrK5s/TF3XXu8aJ4I/AAAAAAAAAdM/7ler9C45NFw/s320/Joshlandyoutubebuttonorange.gif" /></a><br />
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<b>Cystic Fibrosis Resources</b><br />
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<iframe frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="http://rcm.amazon.com/e/cm?t=chonbl-20&o=1&p=8&l=as1&asins=1435705661&nou=1&ref=tf_til&fc1=000000&IS2=1&lt1=_blank&m=amazon&lc1=0000FF&bc1=000000&bg1=FFFFFF&f=ifr" style="height: 240px; width: 120px;"></iframe> <iframe frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="http://rcm.amazon.com/e/cm?t=chonbl-20&o=1&p=8&l=as1&asins=B002WK61K4&nou=1&ref=tf_til&fc1=000000&IS2=1&lt1=_blank&m=amazon&lc1=0000FF&bc1=000000&bg1=FFFFFF&f=ifr" style="height: 240px; width: 120px;"></iframe> <iframe frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="http://rcm.amazon.com/e/cm?t=chonbl-20&o=1&p=8&l=as1&asins=B002PJEXEI&nou=1&ref=tf_til&fc1=000000&IS2=1&lt1=_blank&m=amazon&lc1=0000FF&bc1=000000&bg1=FFFFFF&f=ifr" style="height: 240px; width: 120px;"></iframe> </div>Child Onlinehttp://www.blogger.com/profile/07237159759398811134noreply@blogger.com0tag:blogger.com,1999:blog-8146005570551090640.post-69302799307386557762011-06-22T15:02:00.000-07:002011-07-15T15:43:20.751-07:00Jenny's Picc Line<div dir="ltr" style="text-align: left;" trbidi="on">Two excellent videos showing life at home with a PICC line. The second shows the PICC line being removed. There is some German (???) text but otherwise its all English.<br />
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A picc line is a peripherally inserted central catheter. To find out more about PICC lines have a look at this <b><a href="http://www.cff.org/UploadedFiles/treatments/Therapies/Respiratory/PICC/PICC%20Fact%20Sheet.pdf">PICC fact sheet</a></b> from the Cystic Fibrosis Foundation.<br />
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<iframe allowfullscreen="" frameborder="0" height="344" src="http://www.youtube.com/embed/lvlkogn8yB0?rel=0" width="425"></iframe><br />
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<iframe allowfullscreen="" frameborder="0" height="344" src="http://www.youtube.com/embed/AhqqKQjlrZU?fs=1" width="425"></iframe><br />
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<b>Cystic Fibrosis Resources</b><br />
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<iframe frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="http://rcm.amazon.com/e/cm?t=chonbl-20&o=1&p=8&l=as1&asins=1435705661&nou=1&ref=qf_sp_asin_til&fc1=000000&IS2=1&lt1=_blank&m=amazon&lc1=0000FF&bc1=000000&bg1=FFFFFF&f=ifr" style="height: 240px; width: 120px;"></iframe> <iframe frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="http://rcm.amazon.com/e/cm?t=chonbl-20&o=1&p=8&l=as1&asins=B001P3O3O0&nou=1&ref=qf_sp_asin_til&fc1=000000&IS2=1&lt1=_blank&m=amazon&lc1=0000FF&bc1=000000&bg1=FFFFFF&f=ifr" style="height: 240px; width: 120px;"></iframe> <iframe frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="http://rcm.amazon.com/e/cm?t=chonbl-20&o=1&p=8&l=as1&asins=0879696141&nou=1&ref=qf_sp_asin_til&fc1=000000&IS2=1&lt1=_blank&m=amazon&lc1=0000FF&bc1=000000&bg1=FFFFFF&f=ifr" style="height: 240px; width: 120px;"></iframe><br />
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</div>Child Onlinehttp://www.blogger.com/profile/07237159759398811134noreply@blogger.com0tag:blogger.com,1999:blog-8146005570551090640.post-57381403161718157112011-06-22T15:00:00.000-07:002011-06-28T13:35:24.153-07:00Cystic Fibrosis for Parents<div dir="ltr" style="text-align: left;" trbidi="on">Debra Boyer M.D, a children's respiratory specialist from the Children's Hospital Boston, provides some great information about cystic fibrosis. This video is especially useful for parents who have just found out their child has or may have CF as this video lacks the usual medical gobbledegock seen with many explanations of cystic fibrosis. <br />
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<iframe allowfullscreen="" frameborder="0" height="295" src="http://www.youtube.com/embed/rAd4tzdFPgU?fs=1" width="480"></iframe><br />
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<span style="font-weight: bold;">Cystic Fibrosis Resources</span><br />
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<iframe frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="http://rcm.amazon.com/e/cm?t=chonbl-20&o=1&p=8&l=as1&asins=B000OLV86A&nou=1&ref=tf_til&fc1=000000&IS2=1&lt1=_blank&m=amazon&lc1=0000FF&bc1=000000&bg1=FFFFFF&f=ifr" style="height: 240px; width: 120px;"></iframe> <iframe frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="http://rcm.amazon.com/e/cm?t=chonbl-20&o=1&p=8&l=as1&asins=B000LWW0UK&nou=1&ref=tf_til&fc1=000000&IS2=1&lt1=_blank&m=amazon&lc1=0000FF&bc1=000000&bg1=FFFFFF&f=ifr" style="height: 240px; width: 120px;"></iframe> <iframe frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="http://rcm.amazon.com/e/cm?t=chonbl-20&o=1&p=8&l=as1&asins=B001RRRVMU&nou=1&ref=tf_til&fc1=000000&IS2=1&lt1=_blank&m=amazon&lc1=0000FF&bc1=000000&bg1=FFFFFF&f=ifr" style="height: 240px; width: 120px;"></iframe></div>Child Onlinehttp://www.blogger.com/profile/07237159759398811134noreply@blogger.com0tag:blogger.com,1999:blog-8146005570551090640.post-70947803166134662402011-06-19T13:50:00.000-07:002011-07-07T16:26:59.913-07:00Tube Feeding and Cystic Fibrosis<div dir="ltr" style="text-align: left;" trbidi="on">Gaining weight is often a significant problem for people with cystic fibrosis. Tube feeding through a Gastrostomy tube (G-tube) or nasogastric (NG) tube are two ways to increase food intake without having to eat or drink more. <br />
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These videos from Children's Memorial Hospital provide excellent information about CF nutritional challenges, tube feeding and related topics. It also includes lots of discussion from CF adults, parents, teens and kids about their experiences. <br />
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You can also find out more about tubefeeding from the <b><a href="http://www.cff.org/UploadedFiles/treatments/Therapies/Nutrition/TubeFeeding/Supporting%20Nutrition%20-%20Understanding%20Tubefeeding%202005.pdf">Cystic Fibrosis Foundation</a></b><br />
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<iframe allowfullscreen="" frameborder="0" height="344" src="http://www.youtube.com/embed/4bb-n4JhHkw?fs=1" width="425"></iframe><br />
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<br />
<iframe allowfullscreen="" frameborder="0" height="344" src="http://www.youtube.com/embed/EfAVkPZTR5k?rel=0" width="425"></iframe><br />
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<b>Cystic Fibrosis Resources</b><br />
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<iframe frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="http://rcm.amazon.com/e/cm?t=chonbl-20&o=1&p=8&l=as1&asins=0781741521&nou=1&ref=tf_til&fc1=000000&IS2=1&lt1=_blank&m=amazon&lc1=0000FF&bc1=000000&bg1=FFFFFF&f=ifr" style="height: 240px; width: 120px;"></iframe> <iframe frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="http://rcm.amazon.com/e/cm?t=chonbl-20&o=1&p=8&l=as1&asins=0789490447&nou=1&ref=tf_til&fc1=000000&IS2=1&lt1=_blank&m=amazon&lc1=0000FF&bc1=000000&bg1=FFFFFF&f=ifr" style="height: 240px; width: 120px;"></iframe> <iframe frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="http://rcm.amazon.com/e/cm?t=chonbl-20&o=1&p=8&l=as1&asins=1432947974&nou=1&ref=tf_til&fc1=000000&IS2=1&lt1=_blank&m=amazon&lc1=0000FF&bc1=000000&bg1=FFFFFF&f=ifr" style="height: 240px; width: 120px;"></iframe></div>Child Onlinehttp://www.blogger.com/profile/07237159759398811134noreply@blogger.com0tag:blogger.com,1999:blog-8146005570551090640.post-86783103679077813402011-06-19T13:48:00.000-07:002011-07-16T17:22:41.696-07:00Sweat Test for Cystic Fibrosis<div dir="ltr" style="text-align: left;" trbidi="on">The sweat test is one of the most common methods of testing for cystic fibrosis. In this video Gerald Fernald, M.D explains cystic fibrosis and the sweat test. It also shows sweat tests being done.<br />
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For further information on sweat tests try <b><a href="http://kidshealth.org/parent/general/sick/sweat_test.html">KidsHealth</a></b>, <b><a href="http://children.webmd.com/sweat-test">WebMD</a></b>, <b><a href="http://www.labtestsonline.org/understanding/analytes/sweat_chloride/test.html">Lab Tests Online</a></b> and the <b><a href="http://www.gosh.nhs.uk/gosh_families/information_sheets/cystic_fibrosis_sweat_test/cystic_fibrosis_sweat_test_families.html">Great Ormond Street Hospital</a></b><br />
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<iframe allowfullscreen="" frameborder="0" height="344" src="http://www.youtube.com/embed/8UCWoz6gUp8?fs=1" width="425"></iframe><br />
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<b>Cystic Fibrosis Resources</b><br />
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<iframe frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="http://rcm.amazon.com/e/cm?t=chonbl-20&o=1&p=8&l=as1&asins=0781741521&nou=1&ref=tf_til&fc1=000000&IS2=1&lt1=_blank&m=amazon&lc1=0000FF&bc1=000000&bg1=FFFFFF&f=ifr" style="height: 240px; width: 120px;"></iframe> <iframe frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="http://rcm.amazon.com/e/cm?t=chonbl-20&o=1&p=8&l=as1&asins=B000OLV86A&nou=1&ref=tf_til&fc1=000000&IS2=1&lt1=_blank&m=amazon&lc1=0000FF&bc1=000000&bg1=FFFFFF&f=ifr" style="height: 240px; width: 120px;"></iframe> <iframe frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="http://rcm.amazon.com/e/cm?t=chonbl-20&o=1&p=8&l=as1&asins=1877810444&nou=1&ref=tf_til&fc1=000000&IS2=1&lt1=_blank&m=amazon&lc1=0000FF&bc1=000000&bg1=FFFFFF&f=ifr" style="height: 240px; width: 120px;"></iframe></div>Child Onlinehttp://www.blogger.com/profile/07237159759398811134noreply@blogger.com0tag:blogger.com,1999:blog-8146005570551090640.post-29966766039418942052011-06-17T14:47:00.000-07:002011-06-17T14:47:15.034-07:00Alice Martineau: A Musician with CF<div dir="ltr" style="text-align: left;" trbidi="on"><span style="font-size: small;">A mini-documentary on singer-songwriter Alice Martineau (1972 - 2003), a British musician who graduated from Kings College with first class honours in English. Initially working as a model she changed direction in her mid-20s pursuing a career as a singer-songwriter instead. Her song writing was created through her love of writing, music (she played both piano and flute) as well as her personal experiences - which included living with CF.</span><br />
<div class="jfont" style="margin: 0cm 0cm 0.0001pt;"><br />
</div><div class="jfont" style="margin: 0cm 0cm 0.0001pt;"><br />
</div><div class="jfont" style="margin: 0cm 0cm 0.0001pt; text-align: center;"><span style="font-size: small;">I like to watch you from above</span></div><div class="jfont" style="margin: 0cm 0cm 0.0001pt; text-align: center;"><span style="font-size: small;">it's not an ordinary love</span></div><div class="jfont" style="margin: 0cm 0cm 0.0001pt; text-align: center;"><span style="font-size: small;">I like to feel you</span></div><div class="jfont" style="margin: 0cm 0cm 0.0001pt; text-align: center;"><span style="font-size: small;">so close to me</span></div><div class="jfont" style="margin: 0cm 0cm 0.0001pt; text-align: center;"><span style="font-size: small;">I bet I'm nearer than you'll ever see</span></div><div class="jfont" style="margin: 0cm 0cm 0.0001pt; text-align: center;"><br />
</div><div class="jfont" style="margin: 0cm 0cm 0.0001pt; text-align: center;"><i><span style="font-size: small;"> Lyrics for Inside of You</span></i></div><div class="jfont" style="margin: 0cm 0cm 0.0001pt; text-align: center;"><br />
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</div><div class="jfont" style="margin: 0cm 0cm 0.0001pt; text-align: left;"><span style="font-size: small;">Visit the <b><a href="http://www.alice-martineau.com/index.php"><span style="color: blue;">Alice Martineau Remembrance site</span> </a></b></span><span style="font-size: small;"><span style="font-family: Verdana;"></span></span></div><br />
<div style="margin: 0cm 0cm 0.0001pt; text-align: center;"></div><br />
<iframe allowfullscreen="" frameborder="0" height="344" src="http://www.youtube.com/embed/JQ8sjkvDQ1o?fs=1" width="425"></iframe><br />
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<b>Alice's CD "Daydreams"</b><br />
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<iframe frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="http://rcm.amazon.com/e/cm?t=chonbl-20&o=1&p=8&l=as1&asins=B000075AFT&nou=1&ref=qf_sp_asin_til&fc1=000000&IS2=1&lt1=_blank&m=amazon&lc1=0000FF&bc1=FFFFFF&bg1=FFFFFF&f=ifr" style="height: 240px; width: 120px;"></iframe></div>Child Onlinehttp://www.blogger.com/profile/07237159759398811134noreply@blogger.com0tag:blogger.com,1999:blog-8146005570551090640.post-69177986051707482842011-06-17T14:43:00.000-07:002011-06-17T14:48:33.282-07:00Smoking Near Children with Cystic Fibrosis<div dir="ltr" style="text-align: left;" trbidi="on">Secondhand (also called passive) smoke is very harmful to children with respiratory conditions such as cystic fibrosis.<br />
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<b>This video shows Zak (4), after someone smoked near him. </b><br />
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There are many reasons why its a VERY bad idea to expose children who have cystic fibrosis to secondhand smoke - here are 8 of them. <br />
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<div style="color: #0c343d;"><span style="font-size: large;"><b>8 Reasons Never to Expose CF Kids to Passive Smoke</b></span></div><br />
<b style="color: #0c343d;">1.</b> All children are especially vulnerable to the harmful impact of passive smoke (U.S. National Library of Medicine). Children's airways are smaller than adults so the harmful effects of passive smoke affect them faster (Health Promotion Department, Naval Hospital). It is only logical that children who already have lung problems will be even more vulnerable.<br />
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<b style="color: #0c343d;">2.</b> "Inhaling passive smoke from another person may be even more harmful than actually smoking. That's because the smoke that burns off the end of a cigar or cigarette contains more harmful substances (e.g. tar, carbon monoxide, nicotine, ammonia, cadmium etc...) than the smoke inhaled by the smoker." (Health Promotion Department, Naval Hospital). This is because the smoke coming from the end of the cigar or cigarette is not filtered.<br />
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<b style="color: #0c343d;">3.</b> Passive smoke "damages the tiny hair-like structures in the airways (called cilia). Cilia sweep dust and mucus out of the airways. Tobacco smoke damages cilia so they are unable to work, allowing dust and mucus to accumulate in the airways. Smoke also causes the lungs to make more mucus than normal. As a result, even more mucus can build up in the airways." (Health Promotion Department, Naval Hospital). Children with cystic fibrosis already have problems with excess mucus in the airways so exposure to passive smoke will only make this issue worse. For children with cystic fibrosis the inability of the cilia to clear the lungs would impact the efficiency of the daily chest physiotherapy and airway clearance they must do to avoid infection and the associated lung damage.<br />
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<b style="color: #0c343d;">4.</b> Smoke exposure prior to adulthood can impact lung growth and the level of maximum lung function. (CDC, <i>Preventing Tobacco Use Among Young People</i> ). This is of real risk to children who are already at risk of poor lung function.<br />
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<b style="color: #0c343d;">5.</b> "Children of parents who smoke are also more likely to develop lung and sinus infections." (Health Promotion Department, Naval Hospital) Sinus and lung infections due to passive smoke exposure can make cystic fibrosis symptoms worse and make them more difficult to treat.<br />
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<b style="color: #0c343d;">6.</b> One of the chemicals in passive smoke, cadmium inhibits a protein called CFTR in the lungs. This protein is essential for the healthy working of the lungs. (Cormet-Boyaka et al, 2008, Journal of the Federation of American Societies for Experimental Biology). The impact of tobacco smoke on CFTR has been linked to the development of emphysema (The Journal of Immunology). The lack of this protein is the underlying issue in people with cystic fibrosis. So it takes very little imagination to work out what tobacco smoke would do to a child who has cystic fibrosis.<br />
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<b style="color: #0c343d;">7.</b> Tobacco smoke contains chemicals that are known to irritate the lungs (e.g. ammonia and formaldehyde). This is a significant issue for children who are already prone to lung irritation cystic fibrosis (and often asthma as some children with cystic fibrosis will also have asthma). This type of inflammation can damage the lungs due to the toxins that are released by immune cells called neutrophils whilst the inflammation is present. Children with cystic fibrosis especially are already at HIGH risk of lung damage (Multiple Medical Sources).<br />
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<b style="color: #0c343d;">8.</b> Exposure to tobacco smoke can hinder recovery from lung infections. It has been shown that tobacco smoke impacts the inflammatory and immune responses in the body making it more difficult to recover (Drannik et al, 2004, Am J Respir Crit Care Med).<br />
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So basically...<br />
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"If there's a little set of lungs in your house, take your cigarettes outside, or better yet, get rid of them. Quitting smoking is hard. For kids, breathing shouldn't have to be." (Health Promotion Department, Naval Hospital)<br />
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<b>Cystic Fibrosis Resouces</b><br />
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<iframe frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="http://rcm.amazon.com/e/cm?t=chonbl-20&o=1&p=8&l=as1&asins=1402771630&nou=1&ref=tf_til&fc1=000000&IS2=1&lt1=_blank&m=amazon&lc1=0000FF&bc1=000000&bg1=FFFFFF&f=ifr" style="height: 240px; width: 120px;"></iframe> <iframe frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="http://rcm.amazon.com/e/cm?t=chonbl-20&o=1&p=8&l=as1&asins=0781741521&nou=1&ref=tf_til&fc1=000000&IS2=1&lt1=_blank&m=amazon&lc1=0000FF&bc1=000000&bg1=FFFFFF&f=ifr" style="height: 240px; width: 120px;"></iframe> <iframe frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="http://rcm.amazon.com/e/cm?t=chonbl-20&o=1&p=8&l=as1&asins=0516278568&nou=1&ref=tf_til&fc1=000000&IS2=1&lt1=_blank&m=amazon&lc1=0000FF&bc1=000000&bg1=FFFFFF&f=ifr" style="height: 240px; width: 120px;"></iframe></div>Child Onlinehttp://www.blogger.com/profile/07237159759398811134noreply@blogger.com0tag:blogger.com,1999:blog-8146005570551090640.post-18462749282882425412011-06-14T22:05:00.000-07:002011-06-14T22:08:36.859-07:00Eve (5) Cystic Fibrosis Treatment<div dir="ltr" style="text-align: left;" trbidi="on">An absolutely gorgeous Eve (5 with CF) shows how its done - taking tablets (well capsules really) 3 at a time. These are to ensure Eve digests the food that she eats - as most people with cystic fibrosis, like Eve, do not digest their food without taking pancreatic enzymes.<br />
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These tablets aren't small either. They are 18mm x 6mm each.<br />
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So how many grown ups reading this could swallow 3 capsules of this size in the one mouthful?<br />
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To see the Blog Eve's mum writes visit<b> <a href="http://cuteasabuttonsickasadog.blogspot.com/">Cute as a Button. Sick as a Dog.</a></b> <br />
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<iframe allowfullscreen="" frameborder="0" height="344" src="http://www.youtube.com/embed/LZIPoXKIxb4?fs=1" width="425"></iframe><br />
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<span style="font-weight: bold;">Cystic Fibrosis Resources</span><br />
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<iframe frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="http://rcm.amazon.com/e/cm?t=chonbl-20&o=1&p=8&l=as1&asins=1591470412&nou=1&ref=tf_til&fc1=000000&IS2=1&lt1=_blank&m=amazon&lc1=0000FF&bc1=000000&bg1=FFFFFF&f=ifr" style="height: 240px; width: 120px;"></iframe> <iframe frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="http://rcm.amazon.com/e/cm?t=chonbl-20&o=1&p=8&l=as1&asins=B002FDKXGG&nou=1&ref=tf_til&fc1=000000&IS2=1&lt1=_blank&m=amazon&lc1=0000FF&bc1=000000&bg1=FFFFFF&f=ifr" style="height: 240px; width: 120px;"></iframe> <iframe frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="http://rcm.amazon.com/e/cm?lt1=_blank&bc1=000000&IS2=1&nou=1&bg1=FFFFFF&fc1=000000&lc1=0000FF&t=chonbl-20&o=1&p=8&l=as1&m=amazon&f=ifr&ref=qf_sp_asin_til&asins=B001AO2WGK" style="height: 240px; width: 120px;"></iframe></div>Child Onlinehttp://www.blogger.com/profile/07237159759398811134noreply@blogger.com0tag:blogger.com,1999:blog-8146005570551090640.post-52347738209699216602011-06-14T18:53:00.000-07:002011-07-07T16:28:14.406-07:00Pulmonary (Lung) Function Test in Action<div dir="ltr" style="text-align: left;" trbidi="on"><a href="http://www.nlm.nih.gov/medlineplus/ency/article/003853.htm">Medline Plus</a> describes pulmonary function tests as "a group of tests that measure how well the lungs take in and release air and how well they move gases such as oxygen from the atmosphere into the body's circulation."<br />
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According to the <a href="http://www.nhlbi.nih.gov/health/dci/Diseases/lft/lft_whatare.html">National Heart, Lung and Blood Institute</a> these tests include:<br />
<ul style="text-align: left;"><li>Spirometry (spi-ROM-eh-tre) which measures how much air is breathed in and out (as well as how fast air is blown out). </li>
<li>Lung volume measurement, which in addition to spirometry, measures how much air remains in the lungs after a full breathe out. </li>
<li>Lung diffusion capacity which measures how well oxygen passes from the lungs to the bloodstream. </li>
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So ever wondered what a pulmonary function test (also called a lung function test) for cystic fibrosis looks like...?<br />
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<iframe allowfullscreen="" frameborder="0" height="344" src="http://www.youtube.com/embed/BSscaNi7yK0?fs=1" width="425"></iframe><br />
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<span style="font-weight: bold;">Cystic Fibrosis Resources</span><br />
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<iframe frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="http://rcm.amazon.com/e/cm?t=chonbl-20&o=1&p=8&l=as1&asins=1575725193&nou=1&ref=tf_til&fc1=000000&IS2=1&lt1=_blank&m=amazon&lc1=0000FF&bc1=000000&bg1=FFFFFF&f=ifr" style="height: 240px; width: 120px;"></iframe> <iframe frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="http://rcm.amazon.com/e/cm?t=chonbl-20&o=1&p=8&l=as1&asins=B002WK61K4&nou=1&ref=tf_til&fc1=000000&IS2=1&lt1=_blank&m=amazon&lc1=0000FF&bc1=000000&bg1=FFFFFF&f=ifr" style="height: 240px; width: 120px;"></iframe> <iframe frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="http://rcm.amazon.com/e/cm?t=chonbl-20&o=1&p=8&l=as1&asins=0060546549&nou=1&ref=tf_til&fc1=000000&IS2=1&lt1=_blank&m=amazon&lc1=0000FF&bc1=000000&bg1=FFFFFF&f=ifr" style="height: 240px; width: 120px;"></iframe></div>Child Onlinehttp://www.blogger.com/profile/07237159759398811134noreply@blogger.com0tag:blogger.com,1999:blog-8146005570551090640.post-20439575325839729222011-06-14T18:49:00.000-07:002011-07-07T16:26:17.240-07:00What is the Pancreas?<div dir="ltr" style="text-align: left;" trbidi="on">The pancreas is an organ (specifically a gland) that lies behind the stomach and secretes digestive juices, enzymes and insulin for use by the body. Most (but not all) people with cystic fibrosis have problems with their pancreas. This is usually in regards to problems with digestion although some people with CF can also develop Cystic Fibrosis Related Diabetes (CFRD). <br />
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Want more information about what the pancreas is or does...here's a short video to explain things.<br />
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For more information also try the article <b><a href="http://www.betterhealth.vic.gov.au/bhcv2/bhcarticles.nsf/pages/Pancreas_explained?open">"Pancreas"</a></b> from the Better Health Channel <br />
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<iframe allowfullscreen="" frameborder="0" height="344" src="http://www.youtube.com/embed/1l2GTGEwZOY?fs=1" width="425"></iframe><br />
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<b>Cystic Fibrosis Resources</b><br />
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<iframe frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="http://rcm.amazon.com/e/cm?t=chonbl-20&o=1&p=8&l=as1&asins=0060546514&nou=1&ref=tf_til&fc1=000000&IS2=1&lt1=_blank&m=amazon&lc1=0000FF&bc1=000000&bg1=FFFFFF&f=ifr" style="height: 240px; width: 120px;"></iframe> <iframe frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="http://rcm.amazon.com/e/cm?t=chonbl-20&o=1&p=8&l=as1&asins=0516278541&nou=1&ref=tf_til&fc1=000000&IS2=1&lt1=_blank&m=amazon&lc1=0000FF&bc1=000000&bg1=FFFFFF&f=ifr" style="height: 240px; width: 120px;"></iframe> <iframe frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="http://rcm.amazon.com/e/cm?t=chonbl-20&o=1&p=8&l=as1&asins=0756609976&nou=1&ref=tf_til&fc1=000000&IS2=1&lt1=_blank&m=amazon&lc1=0000FF&bc1=000000&bg1=FFFFFF&f=ifr" style="height: 240px; width: 120px;"></iframe><br />
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</div>Child Onlinehttp://www.blogger.com/profile/07237159759398811134noreply@blogger.com0tag:blogger.com,1999:blog-8146005570551090640.post-25987221841070161822011-06-13T13:47:00.000-07:002011-07-16T15:55:25.265-07:00Beautiful - Cystic Fibrosis Awareness<div dir="ltr" style="text-align: left;" trbidi="on">A beautiful video made by a mum for Great Strides 2011. Her daughter is also included in the video amongst the faces of many beautiful children who have cystic fibrosis. <br />
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<div style="margin: 0px; text-align: center;">Our children are beautiful.</div><div style="margin: 0px; text-align: center;">They are meant for so much more than all of this.</div><div style="margin: 0px; text-align: center;">They are beautiful.</div><div style="margin: 0px; text-align: center;">They are treasured.</div><div style="margin: 0px; text-align: center;">They are sacred.</div><div style="background-color: transparent; border: medium none; color: black; overflow: hidden; text-align: left; text-decoration: none;"><br />
<i> From the family's blog (now ceased)</i></div><br />
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<span style="font-weight: bold;">Cystic Fibrosis Resources</span><br />
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<iframe frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="http://rcm.amazon.com/e/cm?t=chonbl-20&o=1&p=8&l=as1&asins=B000EHQUU8&nou=1&ref=tf_til&fc1=000000&IS2=1&lt1=_blank&m=amazon&lc1=0000FF&bc1=000000&bg1=FFFFFF&f=ifr" style="height: 240px; width: 120px;"></iframe> <iframe frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="http://rcm.amazon.com/e/cm?t=chonbl-20&o=1&p=8&l=as1&asins=0786888695&nou=1&ref=tf_til&fc1=000000&IS2=1&lt1=_blank&m=amazon&lc1=0000FF&bc1=000000&bg1=FFFFFF&f=ifr" style="height: 240px; width: 120px;"></iframe> <iframe frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="http://rcm.amazon.com/e/cm?lt1=_blank&bc1=000000&IS2=1&nou=1&bg1=FFFFFF&fc1=000000&lc1=0000FF&t=chonbl-20&o=1&p=8&l=as1&m=amazon&f=ifr&ref=qf_sp_asin_til&asins=0781741521" style="height: 240px; width: 120px;"></iframe></div>Child Onlinehttp://www.blogger.com/profile/07237159759398811134noreply@blogger.com0tag:blogger.com,1999:blog-8146005570551090640.post-67430723415585990112011-06-11T14:25:00.000-07:002011-06-11T14:25:58.031-07:00Did You Say SicSic Hibrosis?<div dir="ltr" style="text-align: left;" trbidi="on">Well cystic fibrosis is a big mouthful to say, especially when you are only 2 years and 1 month old. Good try Katie :)<br />
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<b>Cystic Fibrosis Resources</b><br />
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<iframe frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="http://rcm.amazon.com/e/cm?lt1=_blank&bc1=000000&IS2=1&nou=1&bg1=FFFFFF&fc1=000000&lc1=0000FF&t=chonbl-20&o=1&p=8&l=as1&m=amazon&f=ifr&ref=qf_sp_asin_til&asins=1418403377" style="height: 240px; width: 120px;"></iframe> <iframe frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="http://rcm.amazon.com/e/cm?t=chonbl-20&o=1&p=8&l=as1&asins=B004HUDFOW&nou=1&ref=tf_til&fc1=000000&IS2=1&lt1=_blank&m=amazon&lc1=0000FF&bc1=000000&bg1=FFFFFF&f=ifr" style="height: 240px; width: 120px;"></iframe> <iframe frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="http://rcm.amazon.com/e/cm?t=chonbl-20&o=1&p=8&l=as1&asins=1435705661&nou=1&ref=tf_til&fc1=000000&IS2=1&lt1=_blank&m=amazon&lc1=0000FF&bc1=000000&bg1=FFFFFF&f=ifr" style="height: 240px; width: 120px;"></iframe></div>Child Onlinehttp://www.blogger.com/profile/07237159759398811134noreply@blogger.com0