The misconseption that if one looks good her severe, chronic pain couldn't be that bad.

hey! this is a great idea. i would like people to know the factors that can cause ic.. such as sugar,antibiotic use,candida,ect.!

This is a great idea.  I think one of the hardest things for me is the lack of undestanding and compassion from family members but also from people in general who have never heard of IC. 

That this can and should be recognized as a disability.  I have been able to maintain part time employment at my full time position.  I was denied benefits to top up my income even though I pay into these benefits at work.  I did provide letters from my GP, my Urologist (who by the way is in support of my treatment with Matia).  I am currently going through an appeal process whereby I have to go in a room with thre Doctors who do not necessarily have much knowledge of this condition.  I thank goodness that I am improving with Matia and have increased my work hours now but still not to full time.  I do have a sneaking suspicion that because I am going the alternative route this is affecting my benefits even though I did try the standard meds with no improvement in fact got worse.  Sorry this is longer than one sentence but the first sentence is the main one.

What a tremendous amount of selfdiscipline and will power one must generate in order to overcome these horrors.
And also, all these kids out there with chronic problems, like asthma, allergies, etc are born to chronically sick mothers, may be asymptomatic but with terrible eating habits, but Western doctors don't see the correlation.

I actually wrote to Oprah myself a few years ago, asking her to bring awareness to this awful condition and to educate the public on IC, etc.  I sent an email through her website however, and it was not very long.  Hopefully her staff will take note o your voice and our voices through your letter.  It would be wonderful if her show raised awareness on IC!!!Hmmm, what I would most want people to know. . .I agree with many of the responses already, that people look at you and think you are fine; or, they compare IC to other chronic conditions and think hey, if I can work with MS or severe fibro, etc, why can't you?  After all, people have back problems and others issues and they still work.  Those are comments that have been made to me.  What is the difference?  IC is organ pain, an organ that has more nerves running to it and through it than any other organ iin your body.  Also, aside from the pain, which no drugs helped, at least in my case, are all the food and environmental sensitivities we have to contend with.  I think those limitations also make it harder to hold down a job.  Not sure what else I would want people to know.  Maybe the sexual suffering that accompanies this disease?  I for one tell almost no one the real reason why I do not have children; I just say I have some health problems that would make it hard to carry a child.  Maybe they never put two and two together as far as sex goes. . .

This is a great idea! but what about if we gathered ALL of our experiences in letters and sent them along with this one???!! Like as supporting letters for this big main letter. IC -Hope, I can send you mine! Email me through here and I will get it to you. Imagine if there was a big fat PILE of letters to Oprah about this - I would thing they might pay attention more since it would look "organized." It's all about "the people" organizing these days!!! I think the hardest part (besides the obvious physical toll) is the heartbreaking guilt of not being a good spouse and/or parent because of the pain. Spouses sure don't sign up for THIS even if they said "in sickness and in health." IC is not really even imaginable in it's scope.

I recall Oprah responding a ways back and she said that the reason she didn't want to put IC on her show was that it was depressing. She wants there to be a uplifting answer so the people who have been healed through Matia's prgram would be vital for getting her to raise awarness on her show.