Advice for book needed.

I

ianpett

New member
As many of you know I am planning my book or portraits of adults with CF. Donations have stalled a bit (probably various reasons for that)
but I want everyone's opinion on this issue:

I'd like to focus the attention a bit more on specific factors affecting adults with CF, maybe a tighter core message we can get out. So I ask you - WHAT
message would you like to say? If you met someone that didn't know much about cystic fibrosis, what would you want them to know? Do we want to talk about
organ donations (getting more people to sign their cards)?

I sincerely welcome everyone's thoughts on this. I'll be posting this up everywhere (Facebook, etc)

http://www.gofundme.com/9gua1o


http://www.ianpettigrew.com/adults-with-cf-project.html


https://www.indiegogo.com/projects/...-adults-living-with-cystic-fibrosis/x/7230330


http://www.cysticfibrosis.ca/your-impact/hear-from-our-cf-champions/ian-pettigrew/
 
A

Angelo

New member
Hi Ian. I want everyone (patients and anyone who cares) that there is a treatment TODAY that will reverse the damage of CF and improve health. But rather than waiting for organs, we are waiting for money. The huge benefits: NO REJECTION, no huge amounts of drugs post procedure, will reduce drug dependence, will improve lung function, will improve life quality, much loser risk than lung transplant surgery. I was not a candidate for lung transplant at this point in life, and I actually do not want to go through that process. I researched the adult stem cell alternative for 2 years before I found the right doctor. It was challenging to find because the drug companies will not allow to FDA to approve such a procedure, and I wanted a US connection. I found the right US doctor literally weeks before I would have died. I have had 2 procedures that brought me back from the dead, and are giving me back my life. I have not even needed a tuneup in the 3 yrs since I have had the procedures.

Every CF Warrior needs to now about this. But as if or more importantly, the rest of the world or US needs to know about this. This type of treatment needs to become mainstream and is infinitely more valuable to patients (CF and other health conditions that are treatable), although its is not at all valuable to the drug companies, because adult stem cells will heal the body and reduce drug dependence. My doctor is treating heart conditions, lung problems, spinal cord injuries, and more. He has treated about 700 patients in the last 8 or 9 years and is continually improving the procedures. And with nearly 100% success rate. Cannot say that for any mainstream medical procedure. But huge push against this kind of procedure is money motivated. So it is an uphill battle because the drug companies will do anything to protect their profits.
 
R

rtorres25

Member
38 at diagnosis

ianpett said:
As many of you know I am planning my book or portraits of adults with CF. Donations have stalled a bit (probably various reasons for that)
but I want everyone's opinion on this issue:

I'd like to focus the attention a bit more on specific factors affecting adults with CF, maybe a tighter core message we can get out. So I ask you - WHAT
message would you like to say? If you met someone that didn't know much about cystic fibrosis, what would you want them to know? Do we want to talk about
organ donations (getting more people to sign their cards)?

I sincerely welcome everyone's thoughts on this. I'll be posting this up everywhere (Facebook, etc)

http://www.gofundme.com/9gua1o


http://www.ianpettigrew.com/adults-with-cf-project.html


https://www.indiegogo.com/projects/...-adults-living-with-cystic-fibrosis/x/7230330


http://www.cysticfibrosis.ca/your-impact/hear-from-our-cf-champions/ian-pettigrew/
Click to expand...

I, too, was 38 at diagnosis. I'm now 48. Celebrating 10 of the healthiest years of my life since diagnosis due to receiving the wonderful inhaled meds available to CF patients. Mine is a story of miraculous healing thru prayer. I suffered from undiagnosed lung illness all my life, but when I gave it to Jesus, I finally got answers and relief. I love the book idea. I wish I could help fund it. Unable to at this time :(
 
E

erock77

Member
I've seen the topic of this book and photos being discussed, but haven't looked at the details too much. I thought I should bring to your attention a similar project that was done with a corresponding book.
The Breathing Room was a nonprofit featuring photos and poems depicting adults with CF and sometimes family members. The pieces usually centered around some aspect of the individuals experience or struggle with CF. After about a decade, The Breathing Room published a book featuring all the submissions. The organization has dissolved, but the book can still be purchased. It's a hard-cover coffee table book, 186 high quality pages with full page images and bio's corresponding to each of the image contributors. It's a beautiful book, but due to the high quality and small quantity it's a bit pricey despite no profit being made from it. I was briefly a board member for the organization and contributed 2 images/poems of my own. One about my experience with ongoing hemoptysis, another on how CF influenced my career choices. A link to preview and purchase the book is below.
http://www.blurb.com/b/3383846-breathing-room
 
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