IC Interview in Sacramento Magazine !

[tialia]

Hi Everyone,

I answered a survey on the internet. The subject was "Have You Ever Used The Internet For Medical Information?" I answered "Yes" and began corresponding with a reporter from Sacramento Magazine. She asked general questions like: what kind of things do I look up, how do I find information, what sites do I use, etc...

I didn't even think to mention IC stuff. (i try to block it out as much as possible) When we spoke on the phone to go over the questions I answered by email, I mentioned that "Four years ago, I discovered that I had Interstitial Cystitis by researching it on the internet. When I printed out the information and brought it to the Dr, he rolled his eyes-as if to curse the World Wide Web for giving medical information to lay-people.

Much to my surprise, she was more interested in that little morsel than she was in all the other stuff she'd been asking me for the past 3 weeks!

Her questions were all about my misdiagnosis! I was shocked! So, I told her about the unnessary surgery I had and all of the other mis-diagnosis'. The interview definately took a turn. She said it will be in the September issue. I don't know how much will actually make it into the magazine but.....for a while...someone heard me.

Therese

[jen_dahling]

I am starting to wonder if the misdiagnosis of IC is bigger then anyone has noticed before. If it is, then I hope that the illness will begin to get more recognition. I never even heard of it before I was referred to my euro. I will be looking for the article!!

[ICLori]

That's wonderful!

Actually IC is among the....is it top five?....frequently misdiagnosed diseases.

Hopefully as more information gets out, and more doctors and patients alike know what IC is, and studies like the ones recently published get read by docs (the ones that say IC is found in 20% of all women) then things will change.

Blessings, Lori

[Sarojini]

There is actually a fairly decent article in the current (August) issue of REDBOOK magazine as well -- it's called "Pelvic Pain: Is It Normal or Not?" and goes through several possible causes of pelvic pain. One of the causes mentioned is IC! And there is a little blurb on it (and their example case in the beginning of the article is a woman diagnosed with IC).

Granted, it's just a small blurb and obviously doesn't really do IC justice at all, but I always consider it a positive step in the right direction when IC is mentioned in a major media outlet such as a national magazine, the news, etc.

The article was also decent because it mentions how pelvic pain of various origins is often misdiagnosed for years, and that it pays for patients to keep seeking different doctors until they feel they are heard. It also mentions that often women are told pelvic pain is "all in their heads" but that it is a very real phenomenon.

Again, while it didn't really give the full story about IC, at least it was a positive step, in my opinion :)

[vm]

Hey, that's really cool, tialia!!!! It is great to be part of getting the word out there to still suffering patients. :)

[VickiB]

That's really neat! Kudo's to you for spreading some info on this disease!

When the article comes out I hope you'll let us know if there's an address we can access it on the web? Or if not, at least let us know what gets written from your interview.

Vicki

[ICNDonna]

That is great! I'd love to be able to read the article when it comes out.

Sending giant hugs,
Donna

[mayray518]

I have seen numerous articles on misdiagnosed diseases and quite a few of them mentioned IC. I will definitely go out and purchase the new Redbook. I feel the same way. Any mention of the disease, even if it is two sentences, is better than the nothing we used to get. It brings a greater awareness. Since the top magazines have started exposing it I have had more people tell me "Oh I read something about what you have". Believe me this is better than hearing "There is no such thing as what you have."

[classics]

This is really good news about these articles. Even if the stories are small ones, it will open the doors to other publishers to research and do their own stories.

Once our families and friends learn about IC, from reading these articles they will have a greater respect for those who suffer from IC. We can keep telling them all about it but when it's in an article in a well-know publication, for some reason they start listening a whole lot better. Now why is that! :rolleyes:

[tialia]

I really appreciate you all replying:) The article will be in the September issue and I'll let you all know how to find it.

Therese

[blue]

That is so wonderful! Don't forget to remind us when it comes out!