Showing posts with label CF children. Show all posts
Showing posts with label CF children. Show all posts

Saturday, July 9, 2011

Cystic Fibrosis Author Leah Orr

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."

                                            From the Amazon Leah Orr Biography Page


You can also read Leah's story in the Cystic Fibrosis Foundation's "In the Spotlight"



Leah Orr's Books

Monday, July 4, 2011

Claire - A Cystic Fibrosis Story

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.



Cystic Fibrosis Resources




Tuesday, June 28, 2011

Breathing Life Awards

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 
  • Academic Life: Nigel Brooke (33) Besseccar, Doncaster 
  • Adult Sport: Chris Goulden (19) Poole, Dorset 
  • Junior Fighting Spirit Award:Sam Roonan (10) Havant, Hampshire

Junior Sport Award




Academic Life Award




Artistic Award



Cystic Fibrosis Resources

Wednesday, June 22, 2011

Jenny's Picc Line

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.







Cystic Fibrosis Resources



Sunday, June 19, 2011

Tube Feeding and 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.

You can also find out more about tubefeeding from the Cystic Fibrosis Foundation








Cystic Fibrosis Resources

Friday, June 17, 2011

Smoking Near Children with Cystic Fibrosis

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)





Cystic Fibrosis Resouces

Tuesday, June 14, 2011

Eve (5) Cystic Fibrosis Treatment

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?

To see the Blog Eve's mum writes visit Cute as a Button. Sick as a Dog.




Cystic Fibrosis Resources

Monday, June 13, 2011

Beautiful - Cystic Fibrosis Awareness

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.

Our children are beautiful.
They are meant for so much more than all of this.
They are beautiful.
They are treasured.
They are sacred.

                                                          From the family's blog (now ceased)




Cystic Fibrosis Resources

Saturday, June 11, 2011

Did You Say SicSic Hibrosis?

Well cystic fibrosis is a big mouthful to say, especially when you are only 2 years and 1 month old. Good try Katie :)




Cystic Fibrosis Resources

Team Asher - Cystic Fibrosis Awareness

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.

Visit the Team Asher Blog and the Team Asher Facebook Page





Cystic Fibrosis Resources

Thursday, June 9, 2011

Getting Nosey about CF

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.

Visit Oli and Nush's Fundraising Page



Cystic Fibrosis Resources




Sunday, June 5, 2011

Made by Cystic Fibrosis Mum

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.....







Cystic Fibrosis Resources