I’m writing a book – “Cystic Diagnosis”

Katie, Noah & Riley - Aug 2010
Katie, Noah & Riley - Aug 2010

We found out that our daughter Katie had CF on September 30 2008. Katie was 17 months old at the time. We were devastated. We were afraid. We were concerned for our child. We worried if our other child might have CF. We wondered what the future would bring. We wondered if we would have any more children. We had a million questions.

OVer time, we got on our feet again. We spent time at the CF clinic. We met with other CF parents. We researched the disease. We spent lots of time on the internet. We read books. We watched movies. And eventually, we got to the point where we felt like we understood what we were dealing with.

To seasoned CF veterans, I’m sure we’re still “rookies”. But, we are insiders nonetheless. And we are recent insiders. Thus, we have a unique perspective and a unique chance to help others.

I’m compiling my notes into what I envision to be a book that will provide an overview of our first year living with CF. It will share our personal story. It will share resources that we’ve found helpful. It’ll explain how we’ve learned to navigate the health care system and how to optimize the help that is available to CF patients and their families.

Ideally, I’d like to provide a handbook that will comfort other families that have just learned that a loved one has cystic fibrosis. And, I’d like to provide context for those that are on the periphery of cystic fibrosis – friends and extended family members of those affected by CF.

Who knows… maybe I’m crazy. Maybe I’m overly ambitious. But, I looked high and low for such a book when Katie was first diagnosed, and, I couldn’t’ find that book. If I could provide something even remotely helpful, then I will have accomplished my goal.

Here’s the basic outline of the book that I’m thinking of writing:

1. Our Story – Intro
2. Practical Matters – Our first clinic visit
3. Lifestyle changes:
* Routine
* Family priorities
* NO SMOKING!
4. Existential angst (optonal philosophy chapter)
5. A depressing reading list
6. Hope:
* Medical research
* Community / Support groups
* The Internet Community
7. Charity work
8. Carrying on & Living life
9. One year on – where we’re at
10. Ethics:
* Having more children after a CF diagnosis
* Universal health care
* Etc
11. References:
* Books
* Websites
* Charities
* Additional resources

What do you think? Is there a need for such a book? Would you find it helpful? Am I missing anything in the basic outline above? Let me know… The more feedback I get, the better the end product.

Thanks,

Todd

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CF in the news: “The fear factor in health fundraising” in CMAJ (Aug 2010)

CF is like drowning on the inside
CF is like drowning on the inside

The Canadian Medical Association Journal (CMAJ) recently published an article and two letters (see footnotes at the end of this post) that dispute (one of the letters defends the marketing) the accuracy of the ads depiction of living with CF, and thus, question the effectiveness and appropriateness of the advertising campaigns themselves.

The criticism is mainly directed at protecting CF patients and their families. The main target of the criticism is an ad that depicts CF as being “like drowning on the inside” and the ad shows a child’s face barely held above the water, visibly struggling not to drown. This is most distressing for CF patients and their families, as it puts a very real visual of “what’s to come” to a disease that many live in denial about.

The ad comes in two forms: there is a print version, and there is also a 30 second video version.

Many families that live with CF live in denial that CF will catch up with them. This is a survival tactic that allows patients to live a life of hope, living with the understanding that they may beat the disease. When vivid visuals are shown, it does provide a real-life horrific reminder of what CF patients live with and what they may experience as CF wears away at the lungs.

As a parent of a child with CF, I was horrified the first time I saw this ad. Others close to our family are unable to watch the ad. Most days, we do well to put it out of our minds, hoping that a cure will arrive before disease progresses to a point of no return.

According to the article, “Cystic fibrosis, a fatal genetic disease that affects about one in 1600 people, causes mucus to accumulate in the lungs, affecting breathing.” According to Dr Annie Janvier, a neonatologist and clinical ethicist at Sainte-Justine Hospital in Montreal, Quebec, “people receiving proper medical care would at no time, not even when dying, feel as if they were drowning or breathing through straws.”

In defence, June Pierotti, the director of communications for the Canadian Cystic Fibrosis Foundation, says, “the ads are not intended to mislead, scare or hurt anybody. Adults with cystic fibrosis are consulted on advertising concepts, as well as parents of children with the disease. Most people don’t know much about cystic fibrosis”, says Pierotti, “and hard-hitting advertisements are necessary to get people to realize it is a serious problem that deserves attention.”

In response to the letter referenced above, Karen Gliddon (Hamilton and Area Chapter President, Adult Committee Chairperson and CF patient) and Nathan Fish (Ontario Representative Adult Cystic Fibrosis Committee Advertising Campaign Working Group Member) urged, “Unfortunately, in contrast to other major diseases, cystic fibrosis is not well known or understood by Canadians. It is therefore vital that CF advertising campaigns present a powerful and real depiction of what it’s like to live with cystic fibrosis.” Further, “Prior to launching an advertising campaign, the Foundation consults and receives input from the CF community, including parents of children with cystic fibrosis, adults who are fighting CF personally, and healthcare professionals. As leading members of the CF community who approved the current campaign, we recognize that its hard-hitting message may affect some individuals negatively, and we try very hard to minimize this impact.”

The ethics of these advertising campaigns are unclear. The concern to protect CF patients from such graphic and scientifically debatable depictions of the disease is understandable. Yet, it is difficult to truly understand what CF feels like. Thus, “shock and awe” advertising does raise awareness, and with it, funds that are desperately needed for additional research to help find a cure.

I don’t know about you, but, I’m willing to tolerate a bit of debate over the accuracy of the ads if it means additional awareness. I say kudos to the Canadian Cystic Fibrosis Foundation for their campaign. While disturbing to those of us that live with CF each and every day, I am thankful for the awareness and the benefits that the advertising generates.

My two cents…

Todd

Articles referenced in this post:
The fear factor in health fundraising
Raising money for cystic fibrosis: At what price?
Cystic fibrosis advertising campaigns – a response

CF in the news: “Surviving cystic fibrosis” in Macleans (Aug 31 2010)

Ashley Donelle - Macleans Aug 31 2010
Ashley Donelle - Macleans Aug 31 2010

Thanks to Cathy Gulli and Macleans for sharing this story about Ashley Donelle, a 20-something Montreal woman with Cystic Fibrosis who recently underwent a double lung transplant.

The article charts Ashley’s suffering with CF, the transplant that saved her life and the ongoing health concerns that come with being a transplant survivor. The article also highlights Ashley’s health improvements since her surgery. Ashley words: “I had to train my brain that my body wasn’t sick anymore.” She is now blessed with good health. Health that allows her to live and celebrate life every day with her two children.

There is good news in the ongoing research and what it already means for CF sufferers: “Life expectancy has increased by about one year every year over the last decade—to a median age of survival of 47 in Canada.”

More encouraging is what’s to come. Dr Francis Collins, one of the co-discoverers of the CF gene, is quoted in the article as saying, “I’m optimistic enough to say that it will be a story about a disease conquered.” That day can’t come soon enough.

What conquered will mean remains to be seen. Dr Felx Ratjen, head of CF clinical research at the Hospital for Sick Children in Toronto, “would rather talk about control of the disease because this is a more realistic view.”

Many are optimistic that technology will yet prove to be a great equalizer when it comes to CF. A cure or control can’t come soon enough. Just ask those currently suffering from the disease. Over 3,600 CF patients require daily treatment to help stave off the effects of this fatal genetic disease.

But for now, stories like Ashley’s offer motivation to those that find themselves challenged by the disease.

Thank you Ashley for sharing your story. You truly are an inspiration.

Todd

Great Strides 2010 Thank You Party

Great Strides 2010 Thank You Party
Great Strides 2010 Thank You Party

Ever since Katie was first diagnosed with Cystic Fibrosis two years ago, the love and support of our family and friends has been phenomenal. We have been extremely grateful to everyone that has offered prayers, words of encouragement, friendship and support as we adjusted to living life with a fatal disease always lurking in the background.

On the last Sunday of May each year, the Canadian Cystic Fibrosis Foundation hosts the annual “Great Strides™: Taking Steps to Cure Cystic Fibrosis” walk. This past May was our second year attending the walk. It was a greet day – the weather was perfect, we had a great turnout and we had a lot of fun. Check out this post for all of the details from the day.

This year, Team Katie had 210 sponsors and 53 people walked with us at Safari Niagara on Sunday May 30 2010. Team Katie raised over $13,000! Check out the Team Katie – Great Strides 2010 Results! blog post for a full summary of what the team accomplished this year.

To say thank you and to celebrate the success of this year’s walk, we hosted a thank you party for everyone that walked with us this year. The party was held at our house on Sunday August 29. You can see pictures from the event at this flickr slideshow.

We would like to say thank you to everyone that walked with us, donated to this year’s Great Strides walk and/or offered encouragement to us this year. We are truly grateful for the generosity that everyone has shown.

Much love,

Todd, Julie, Noah, Katie & Riley

Hello Fall and our new blog look & feel

Dow Family 2010
Dow Family at Ball's Falls - Sep 6 2010

I know that I said I’d post on this blog over the summer. I had good intentions… but… that didn’t work out so well. My apologies.

Regardless… welcome to the new look and feel for BreathingAsAFamily.org. I have consolidated all of my blogs on wordpress. I was hosting things on blogger, but, after much deliberation, I decided to switch. I’ll write about the switch and my reasons for doing so on my sister blog, wirepaper.com, in the near future. Check there if you’re interested in some geek reading.

And welcome to Fall 2010! I know it’s not “calendar fall” yet, but, with school back in, it certainly feels like summer is over.

Yesterday, we marked the end of the summer by going on a hike to Ball’s Falls in Vineland, Ontario. We had a great time. And, we got some great pictures as well. As you can see from the picture posted here, Riley has now officially participated in his first “high risk activity” by sitting close to the edge of Ball’s Falls.

Here’s a sneak peak at this fall’s content on BreathingAsAFamily.org:

  • Family update – what we did this summer;
  • Great Strides 2010 Thank You Party;
  • CF in the news: macleans article from Aug 30;
  • CF in the news: “The fear factor in health fundraising” – comment and response;
  • Help me write a book, entitled, “Cystic Diagnosis: Our FIrst Year with CF”;
  • “Cystic Diagnosis” – share your stories of your first year with CF;
  • “Cystic Diagnosis” – what should be in a “handbook for families new to CF”?
  • As my book takes shape, I’ll post content excerpts from time to time as well;

So, check back often. It should be a fun fall/winter. I hope to post a couple of entries a week through the fall and winter.

Talk soon!

Todd