Hi everyone,I have been asking people to e-mail Oprah to ask for a show about CF. I have been trying to raise awareness and I thought that, since she reaches so many people in so many countries, having Oprah do a show it might help someone. You can e-mail her by going to www.oprah.com and click e-mail Oprah or show ideas. Just tell your story, how CF effects you and your family, the hardest thing about CF. Tell her about meds and the things you have to do to stay healthy............you get the idea, run with it.ThanksAndrea
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e-mailing Oprah/CF awareness
- Thread starter Drea
- Start date
Perhaps a joint show about CF and Sickle cell anemia. They are both double mutation life shortening disorders that "usually" fall among the caucasian and african-american races. This may be more attractive to Oprah since very few African americans have CF. I think a show about both of these diseases would be great. I for one would like to know more about sickle cell anemia.Just a thoughtDon P
Thank you for your great suggestion! I emailed Oprah and really hope that this works. In the same line of thinking, a few weeks ago I also emailed my Great Stride letter to all our local newspapers, as well as Child magazine, Parenting magazine and People magazine. I think that it is a shame that the number one fatal genetic disease is never talked about and so widely misdiagnosed. I hope through some of our efforts we can open a few doors and help start to educate the general public about CF. Good luck to all of you. --Katrina
I did actually suggest this in one of my many e-mails to Oprah. The thing is, Many many people of African American descent are misdiagnosed due to people thinking that they just don't really get CF. Yes it is most common among those of NW Euro descent but people of other background do get CF. I'm not sure if this is such an issue with sickle cell anemia. But anything that will get the producer's attention is great!Andrea
Good idea! I get so frustrated sometimes with our local paper. Every time they print a story about CF , they make it seem like its no big deal. That they have come a long way on drugs and stuff, but no mention of all the insurance hassles and hours put into treatments and hospital visits, and not to mention socail issues associatied with it.
Mandaberrie
New member
Well in my small town there hasn't been much of anything either in the newspapers or news. there is however every once in a while something on the medical sideline of the news, sometimes very rare they will ahve something about cf but just new medicine break throughs. but you guys would be proud of me. well my aunt anyway. my aunt called the newpaper and told them about me, (this was in 2001) how I struggle with cf, i was on top of my school work and i also showed sheep in the livestock shows (this town is farmer, rodeo stuff and this was the time of year when shows went on) oh p.s. these "shows" aren't easy or like dog shows.....so they had a guy come and interview me in the middle of the stockshow!! for you farmer ppl or who know what I am talking about this is a big deal. I was busy trying to get my sheep ready, nervous for the show and the interview. While being interviewed i got my lamb ready, a guy i showed with asked if i could help him show his sheep, ate some breakfast realy fast ( i was up realy early). then i was showing in the ring while the interviewing guy's camera man took pictures. but what sucked about that was in the paper it was a picture of me with the other guys lamb <img src="i/expressions/face-icon-small-sad.gif" border="0"> i wanted to see my own oh well. Anyway the article didn't discuse cf as much as i had hoped it would, you know its all up to the writer but there was enough to explain it and the hardships. it even explained my port that i had acessed during the stockshow. so it showed the side of cf that is hard but also the side of cf that shows during the hard parts we are tough and can go on. or maybe to the stupid readers shows them that if i can show with an iv then its no big deal or i am plain stupid. but either way it reached someone out there in my small town. even if it just made them think that their lives aren't so bad after all. anyway. i was kinda proud of myself for that one. don't worry no big head here. i realy hardly tell ppl about it. this post just reminded me and maybe give you guys an idea. start something in the newspapers of your town. you enver know they may think its a great story. my newspaprer thought it was important enough to put my artcile on the front page right under George W. Bush. I felt honored. anyway talk to you guys lateramanda