Wednesday, June 1, 2011

A Response From The CDC!!

Ms. Newell,
I appreciate your message very much and agree with you that
we need to make an editing change on p. 22 of "Through the
Eyes of the Eagle," which we will make with the next printing.
Thank you for bringing this to our attention.

The "Eagle Books Series" were written for Native children
about 10 years ago by a lovely community health
representative on the Nambe Pueblo reservation, very
concerned about her community, including the future for her
own grandchildren, as she worked with many people with and
at risk for type 2 diabetes. The stories have been popular in Indian Country and, in recent years, other communities and
teachers working with youth also at risk for type 2 diabetes
have enjoyed the stories. We realized that the audience for the
stories was growing and could include children with type 1
diabetes, as well. With our last printing of the books, a new big
size for teachers and community leaders, we edited the
"Introduction" and the last page of the books to read 'to
prevent type 2 diabetes' so that readers would know this was
what was meant. As you correctly note, type 1 is an
autoimmune disorder and it cannot be prevented at this time.

All children and youth with diabetes, type 1 or type 2, are very
close to our hearts and our mission in our work at CDC. We are
excited about a new book, following on the heels of the Eagle
Books stories, that will soon be released. The youth novel,
"Coyote and the Turtle's Dream," features a group of middle-
school age children engaged in solving a mystery of low water
levels on their reservation, with health messages woven in.

For example, in the book, Rain that Dances (R.D. or Rain to his
friends), works with the local convenience store owner to
place healthy snacks in the front of the store. Because we also
wanted the children to learn about type 1 diabetes and
differentiate it from type 2, the author modeled a character
named "Arianna" after a dear friend of ours, 11 years old, who
was diagnosed with type 1 diabetes at 2 years of age. Arianna, in real life and in the book, is a wonderful teacher, excellent
friend, and terrific detective who collaborates with her friends
to solve the mystery and help restore balance in the
community. I would like to send you a copy when it is printed
in a few months. We plan to develop graphic novels along the
themes of the book later this year.

Thank you for your insightful comments. We send our best
wishes for your child, your family, and your important work
with JDRF. Please feel free to call me (770-488-5285) or write
(dxs9@cdc.gov) with any questions or comments, and let me
know if you would like a copy of "Coyote and the Turtle's
Dream" when it's ready.

Dawn Satterfield RN PhD
Native Diabetes Wellness Program
Division of Diabetes Translation
Centers for Disease Control and Prevention
dxs9@cdc.gov
http://www.cdc.gov/diabetes/projects/diabetes-wellness.htm

I spoke with Dawn for about an hour. I spoke on behalf of not only people with Type 1 but Type 2, and LADA as well. I explained that Type 2 is being portrayed as a disease only obese and inactive people get, and thats simply not true. By placing blame we are making these people feel isolated and alone, and thats not the right approach if we want to help them.

I explained adults can and do get type 1 and it is not just a childs disease.

I also explained our children can eat sweets in moderation just like any other kid.

I also addressed where the book said " Diabetes is not a good thing". I know D isnt something we would choose for our kids or ourselves, but that doesnt make life any less amazing. My son can and will achieve all his goals Diabetes or not. Some of the most amazing people Ive met are because of Diabetes!

She not only said she understood, but agrred and would contact the writer and bring up these points! And contact me with additional questions and information.

I have also learned JDRF does not have these books and never havve, the Nevada Diabetes Association says they have them in storage and donated some to the libraries but insist Justice didnt get them from them. Yea Im not diggin that answer either.

Stay tuned....Im not finished...

14 comments:

Denise said...

YAY LEXI! So glad you got a response and they are planning to make changes.
Thank you for speaking up!!

Lori- The Incredible Mr. Sweets said...

Great job!! Thanks for being a voice for ALL of US!

Denise aka 'Mom of Bean' said...

So great that they responded and that you made sure they didn't just leave it at the pathetic edit they are planning to do!

Nikki of Our Diabetic Warrior said...

You go girl!!!!! Thank you for all you're doing!

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busymom said...

oh geez, they hit you too. Ahh!!

That was awesome getting a response, thanks for speaking up!! : )

Tricia said...

Good job! Reading your tweets about those books really burned me up. I kinda got the point it was aimed at type 2, but you make a very valid point that type 2's should not be made to feel isolated, because they did nothing wrong. I think this is amazing progress in such little time:) I can't wait to hear what comes next...

The DL said...

fight on!

Scott said...

Thanks for reaching out to the CDC about this; frankly, I have given up on that organization. Over the years, the CDC has turned a blind eye to the needs of type 1 because at present, they are powerless to prevent it from occurring, and several trials (involving insulin) have proven ineffective. Tom Friend, the CDC's current chief, is a complete idiot. As a doctor, one would think he should know better, but his logic is that 90% have type 2, and my response is that still means that several million people have type 1 and our needs should not be so casually dismissed. Having said this, the Lancet last year rightfully criticized public health authorities for doing nothing to prevent the type 2 "epidemic" decades ago, now they are running around screaming about what an epidemic they have at their hands, when in reality, they should have done things 30 years ago and decided to focus their efforts on AIDS at the time. In any event, your conversation with them ensured this organization will realize there is a large group of people out there with type 1 and our needs cannot be so casually dismissed.

Amy said...

Sometimes I feel like we're pecking away at an iceburg with toothpicks when we try to educate The World about diabetes. But this conversation feels like more than that. :o) Just that fact that the CDC wouldn't push your comments to the side and try to ignore the issue is huge to me. Keep up the good work!

Jules said...

well done. glad you got a response and they acknowledged your concerns with action.

Amy said...

You are soooooooo cool. Seriously. Thank you from the bottom of my heart for taking the time to address this mis-information and take a stand to protect our T1D kiddos. Love you, lady!!!! Keep kicking ass.

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