Oprah’s Big Give
Dear Oprah, I am 14 years old. I was diagnosed with Crohn’s disease when I was 9. Usually, Crohn’s is inflammation in the intestines causing abdominal pain and diarrhea. However, I have disease in my bones, joints, trachea and bladder as well as in my intestines. There is no cure for Crohn’s and it significantly increases the chances of getting colon cancer. My 12 year old brother also has the disease. I have been on steroids many times to treat my disease. Last year, I was hospitalized twice and I missed a month of school. Instead of using steroids again, my doctor gave me the option of going on a liquid formula diet designed for people with Crohn’s. I did well for a while, but I am having difficulties transitioning back to food. The formula has been my only source of nutrition for most of the past year. My mission is to educate and spread awareness about inflammatory bowel disease (IBD) so that it can be better understood by children, teens and adults. I am very involved with the Crohns and Colitis Foundation of America (CCFA). I am the Youth Ambassador for the CCFA. Once people understand what the disease involves, the public will be more willing to help. Some of the things I have done to accomplish my mission include the following: • I lobbied and testified before a Senate subcommittee to pass the Restroom Access Act in Minnesota. (It was made a law in August 2007) • I have lobbied in DC to increase funding for IBD research. • I have shared my story at numerous CCFA …
July 26th, 2010 at 2:51 am
i just got diginosed yesterday and it took them a year to diginose me ive been to 20 some odd doctors before some one figured it.
July 26th, 2010 at 3:42 am
keep up the great work! and god bless you. i had a friend who had crohn’s and i think what you are doing is amazing.
July 26th, 2010 at 4:14 am
hi i have crones too, i just turned 12 and i have had it since second grade. lately i just got surgery from it, and i havent been doing that well. i wish i was a lucky as you. i am jewish and for my bat mizva project i am raising money for the camp that helps crones and colitice too. i hope that sooner or later they find a cure. i admire you soo much, and i hope that you stay healthy.
July 26th, 2010 at 4:48 am
Thank you! You bring so much beauty and energy to the crohns cause.
I have had crohns since 1999 and am currently recovering from a flare up right now.
Keep up your good work for crohns awareness.
Most people have no understanding. Even those of us with CD often are surprised by this mysterious disease. For me it is very unpredictable.
Thank you and God Bless!
July 26th, 2010 at 5:42 am
inspiring.i was diagnosed with it too…at age 16 and now my life has took a different path…i was on every drug, i got my colon removed..and gone through 4 surgeries..i want to know if i can start a crohns awareness where i live and raise money to find the cure!!!! i live in Hawaii and this song itself made me inspired even more….what can i do to help?
July 26th, 2010 at 6:21 am
I have crohn’s too! i was just diagnosed this past week. I will be on steroids for 3 months so i don’t have to have it for too long! I’m pretty skinny, (78lbs and 4 7″) I really want to go to camp oasis in PA. (I don’t live in PA) And I don’t wanna get picked on from the steroids! If anyone wants to talk about it they can send me a message!
~Ali
July 26th, 2010 at 6:50 am
my mother and husband both are living with crohn’s. some days are good some are bad. my husband just started humeria. i to wish oprah would do a show on crohn’s. most of my friends have no clue what it was when i told them that he was having problems with it. good luck, maybe all our voices together can be heard someday. i have 3 small children and worry daily if they will develop this horriable disease as well. happy holidays!
July 26th, 2010 at 7:14 am
i have crohnss too!! i got diagnosed last year and was in the hospital for 5 weeks. i was on prednisone and my face got soo chubby. it helped turn my life around though because now i am really healthy and i do so many sports to stay in shape. im also going to ccfa this coming summer to meet other ppl.
July 26th, 2010 at 8:07 am
i have crohn’s too!!
i was on prednisone and my face got huge and everyone made fun of me….i was called chipmunk cheeks…but i’m doing better after my surgery!
July 26th, 2010 at 8:56 am
I’m 11 and have had UC since I was a baby! I love Camp Oasis!!!
You did an awesome job on this video. I have a CCFA speech I gave on youtube.
July 26th, 2010 at 9:12 am
i have crohn’s too. i was diagnosed when i was 5 and i am now 14. my sister was ccfa’s woman of the year i think last year or the year before, i cant remember. i loooooove camp oasis soooo much! good luck with whatever you do:)
July 26th, 2010 at 9:48 am
This is such a wonderful video and it’s amazing what you’re doing to help Crohns patients. I also have Crohns and go to Camp Oasis. However, I go to the one in Pennsylvania. Going there has changed my life and made me a better person. I understand what I have better than I did before. And I was able to meet a bunch of new friends that understand what Im going through. Good luck with your Project CURE.
Also, I was wondering where I could buy one of your bracelets. Is there a website?
July 26th, 2010 at 9:51 am
i have crohn’s disease. I am going to join a research project so we can find a cure. I luckily haven’t got a flare up in a while. I hope not to get one this winter either.
July 26th, 2010 at 10:50 am
Thank you for all of your hard work!
July 26th, 2010 at 11:02 am
I am sorry to hear about your Crohn’s! Camp is a really great way to meet other people that have it. I was diagnosed when I was 9 and it took my parents 4 years to convince me to go. Good for you for being able to go right away! I hope you like it!
Laurel
July 26th, 2010 at 11:44 am
hey laurel~~~ its aimee, i love the video a lot, ur a great person and have a lot of hope and faith, i wish i had a spirit like ur’s u make it a better world for some people for sure!!! You’ve done a great job spreading awarness!!im so glad we got to meet!! ur a great person! in these pics zach is so little!!! he’s cute! and i love camp O!!! everyone that has crohns or colitis should go, my first year rocked!!! i wouldn’d trade it for the world!! u make me proud to have this!! loveya laurel!!
July 26th, 2010 at 11:58 am
i am erin and i am 10 and i was diagnosed with crohn’s 5 months ago i am going to camp in new york and i am meeting more people with it i thought i was the only one with it for a while now i no im not alone
July 26th, 2010 at 12:42 pm
Camp O definitely rocks! It is one of the best parts about summer! Are you going again this year?
I am glad you enjoyed the video!
Laurel
July 26th, 2010 at 1:27 pm
I am glad to find that so many people are able to see all of the good times greatly outweigh the bad. When ever anyone is having a bad day they just have to look at a person like you and see how positive your attitude is in order for them to feel better. I hope you know that you are helping someone each day just because of your amazing outlook on life!
Keep it up!
Laurel
July 26th, 2010 at 1:55 pm
hi my name is hannah and i have had crohn’s for 2 years. I’m 17 years old and I went to camp oasis in Michigan which was a lot of fun.
I really enjoying watching a video. It was an inspiration for me and everyone who has crohn’s or knows someone who has it.
July 26th, 2010 at 2:11 pm
i have crohn’s and celiac. it gives a different light on life. yes it is a nightmare at times, but somewhere over the rainbow is happiness.
July 26th, 2010 at 2:48 pm
she can’t swallow pills either…
July 26th, 2010 at 3:05 pm
I’m sorry to hear that…
July 26th, 2010 at 3:35 pm
Thanks for your words of encouragement! It means a lot to me to know that I am helping others that are going through the same thing. I hope to find a way to get other teenagers like you involved sometime in the future!
July 26th, 2010 at 4:30 pm
my sis has this