Joan (50) Life with Cystic Fibrosis

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.



Cystic Fibrosis Resources

Conversations with Cystic Fibrosis Mums

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.



Cystic Fibrosis Resources

Cystic Fibrosis Documentary

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).



Cystic Fibrosis Resources

Cystic Fibrosis Classic - "Breathe"

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.




The Making of "Breathe"




Interviews with the Singers of "Breathe"



Cystic Fibrosis Resources

Eva Markvoort: Blogger with CF

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.





Eva's Final Video

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

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

Dying Young - Cystic Fibrosis Documentary

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.

Cystic Fibrosis Resources