Statistics about life expectancy in cystic fibrosis (which are generally listed as being in the 30s) are a mathematical average - usually the median average 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.
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.
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 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.
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 Isabel Stenzel Byrnes and Anabel Stenzel, authors of The Power of Two on their visit to Japan.
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 It is a bit out of date in regards to current research but it does include useful information about the potential benefits and limitations of genetic therapy.
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 Mayo Clinic and Kids Health websites (there is also information especially written for teens and kids).
Bronchiectasis (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).
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.
The three videos include interviews with the singers, the making of the "Breathe" video and the performance.
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.
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 :)
A short documentary about Leah Orr the author of two children's books about cystic fibrosis - "Kyle's First Crush" and "Kyle's First Playdate". Leah's daughter Ashley has cystic fibrosis.
"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."
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.
If you know of other great videos showing more about normal day-to-day life with CF please share them in our comments.
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 Death at 25: Blogging the end of a life.
Eva, from British Columbia, Canada, became well known through her blog 65 Red Roses: Thoughts on Living with CF and the documentary about her - 65 Redroses. 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.
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 The Power of Two: A Twin Triumph over Cystic Fibrosis. This is the first memoir to explore the life of twins living with cystic fibrosis and has inspired the movie - The Power of Two.
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.
The 2009 Winners List:
Junior Sport: Cameron Saltmer (16) Dover, Kent
Artistic Award: Chris Benbow (21) Crewe
Adult Fighting Spirit: Sarah Elsbury (26) Norwich, Norfolk
Fundraising Award: Jodie Symington (24) Hebburn, Tyne and Wear
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" (from the Joshland blog).
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........
Here's a selection from Morganko's adventures. To see the rest you'll need to visit him in Joshland.
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.
A picc line is a peripherally inserted central catheter. To find out more about PICC lines have a look at this PICC fact sheet from the Cystic Fibrosis Foundation.
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.
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.
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.
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.
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.
Secondhand (also called passive) smoke is very harmful to children with respiratory conditions such as cystic fibrosis.
This video shows Zak (4), after someone smoked near him.
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.
8 Reasons Never to Expose CF Kids to Passive Smoke
1. 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.
2. "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.
3. 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.
4. Smoke exposure prior to adulthood can impact lung growth and the level of maximum lung function. (CDC, Preventing Tobacco Use Among Young People ). This is of real risk to children who are already at risk of poor lung function.
5. "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.
6. 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.
7. 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).
8. 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).
So basically...
"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)
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.
These tablets aren't small either. They are 18mm x 6mm each.
So how many grown ups reading this could swallow 3 capsules of this size in the one mouthful?
Medline Plus 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."
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).
Want more information about what the pancreas is or does...here's a short video to explain things.
For more information also try the article "Pancreas" from the Better Health Channel
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.
A very emotionally powerful cystic fibrosis video made for Great Strides 2009 (the section with the teddy bear is especially poignant). It's another example of the fabulous awareness videos parents make.
Asher was diagnosed with cystic fibrosis as a newborn. Their second (and also gorgeous) son Paxon was born with both cystic fibrosis and another genetic disorder. He died at 11 days of age.
A cute cartoon for kids created for the Cystic Fibrosis Trust.
Oliver Dillon (12), a young actor with cystic fibrosis, provided the voice of Oli. He hopes the video will not only help children with CF to understand their condition but also enable their friends to have a better understanding of life with cystic fibrosis.
You can see a video interview with Oli on the Kent Online website
Overall a great cartoon for children, both with and without cystic fibrosis, and a must watch if you haven't seen it yet.
I think this is one of the best cystic fibrosis documentaries available (and one of the highest ranking on YouTube with 122,014 views when this blog post was written).
'Dying Young' focuses on a number of young adults with cystic fibrosis and their families, who are in different stages of their CF journey. It provides basic information about what cystic fibrosis is and the common treatments and hospitalizations - but it goes beyond that. It provides a glimpse of the human side of CF. Rather than watering down the struggles of individuals with CF and their families it shows the raw emotions that are part of life with cystic fibrosis. It shows how heart breaking cystic fibrosis can be.
Produced and created by Current TV it has been used by the Cystic Fibrosis Foundation to increase awareness of the disease (after its original airing on television). It is a video that may help those whose lives are not impacted by CF to gain a better understanding of cystic fibrosis in a way that statistics just can't show.
Note: Siobhan Ryan who was awaiting a lung transplant died on June 24th 2008. The day before this video was loaded to YouTube by the Cystic Fibrosis Foundation.
Two simply beautiful videos made by a mum of her children - Joel (CF) and Jeslyn (no-CF). Children with CF and their siblings are such special human beings. Jeslyn has always wanted to help look after her brother Joel in regards to his CF treatments. She must be one of the youngest nurses in Australia!
Parent-made videos seem to capture the heart of CF that are often missing in other videos. They go beyond words and statistics.....
Christina and Ali Christensen wowed audiences of the 2010 America's Got Talent with their brilliant performances. Christina, Ali and two other Christensen siblings have Cystic Fibrosis (CF).
CF usually affects the lungs so Christina and Ali have overcome many obstacles to follow their love of singing. The sisters "message is that each day is a gift where there is joy to be experienced and dreams to be realized while navigating our personal trials". [from the website]
With the vast number of uploaded videos on the internet it can sometimes take a lot of effort to find good quality videos about cystic fibrosis. The My Dream videos from the Cystic Fibrosis Foundation would have to be my absolute favourite videos created by any CF organization. These videos are simple yet so powerful. The emotion is real rather than being scripted. I feel they provide a sense of hope without glossing over the reality of life with cystic fibrosis.
The Cystic Fibrosis Foundation explains that they "asked some of the many extraordinary people affected by this disease to share their dreams for the future." A wonderful approach I believe as something cannot become reality unless it is imagined first. It is through the creativity and imagination of researchers that better treatments and a cure will be found for CF.
There are six videos in the series - here are three of my personal favourites.
Please note: Some of these videos are quite emotionally powerful due to the inclusion of parents who have lost a child to cystic fibrosis.
on their visit to Japan. 
" and "
". Leah's daughter Ashley has cystic fibrosis. 
