help me find the cause

[eyeluvbeanies]

hello my name is diane and i have IC for the past 6 years. Ive been doing my own research and sending people with IC a survey for them to fill out. the object is to find the cause of IC. ive been getting alot of responses. the more people the better. If youre interested in filling out a survey please email me and ill send it to you. thanks alot
diane
[email protected]

[icnmgrjill]

We did that same survey for over a year. You can read the results in our survey center at: http://www.ic-network.com.

As to cause, the research of the University of Maryland (Keay and Warren) appears to be the likely answer... the APF.. and, as well, a genetic factor in some of us. Check out his guest lecture in our Meet the IC Expert Transcripts at: http://www.ic-network.com/guestlectures/

Jill

[gigipark]

I'm not so sure it is fair or advisable to say that work being done at the University of Maryland suggests THE likely answer. There are seven active research groups I know of (probably more) who are currently being funded by the NIH/NIDDK. Beyond AFP, they are looking at potential autoimmune and mast cell relationships among other things. Susan Keay, M.D., Ph.D., Associate Professor, Division of Infectious Diseases at the University of Maryland believes that these research groups may all be examining "different parts of the same elephant." Additionally, research has suggested that ulcerative and non-ulcerative IC may be different entities with different etiologies. In fact, there may well be different causes for IC in general, all of which are valid. To say that one is more likely than others at this point is premature. It's like suggesting that there is only one cause for lung cancer, for example. Thankfully, these research group share their results and are working cooperatively to put the pieces of the puzzle together. Of course, I am no way intending to minimize the importance or relevance of the work being done at Univ. of Maryland. However, as I stated, it probably is not a good idea at this point to suggest that they may hold THE likely answer. You may be isolating a lot of people who do not fit their research model.

[CaliAnn]

Gigi - well said! I too think suggesting ANYTHING at this point is premature. I also believe that IC will turn out to be a lot of different diseases/afflictions/infections/virus all of which need to be isolated and treated accordingly. It would explain why some people respond to treatments, while others don't - why some have history of UTI's and others have never had a UTI in their lives (such as myself),etc.
I am glad you brought up the points that you did -they needed saying - thanks,

Ann

[eyeluvbeanies]

i am not doing the same survey as univ of maryland. i am not asking what YOU think may cause IC, im asking questions that may be linked to IC. i too think there are more than one cause but i also think they all have a link to one another. from the data i have gotten so far is very interesting. alot of people have the same answers. so like i said the more people to help me on this survey the better. i also think there are different forms of IC just like there are different forms of cancer. All i know is before being on antibotic theraphy i was in major pain and i dont want anyone suffering anymore so i will do what i can to help find relief whether im sucessful or not but atleast i tried.

[gigipark]

I think we are saying the same things here. I did not mean to make you defensive in expressing what I think, whether you were seeking my opinion or not. I wish you well in your effort to collect information and commend you for doing so. Perhaps you can share the results with us in the near future. I would really be interested in hearing of them. Again, my apologies if you found my tone to be contentious. That was not my intent. This is, however, a forum and I do hold some fairly strong opinions on this subject matter. I think we all should.

Gigi

[eyeluvbeanies]

yes this is a forum and you may say what you will. we are all sensitive on the subject of IC. i have alot of people glad to help with this survey. i didnt think i was going to get bashed for it. my intent was to help people with IC not to hurt them. If people where more eager to help with IC research and funding, a cause and a cure would of been found by now. i never heard of IC till i got it as im sure you didnt either. we should support one another instead of bashing them. whether you meant to or not i was offended. im here to help myself and other people with IC whether im successful or not, atleast i tried. after im done with my research i will be glad to share the results. So people you would like to HELP with the survey please email me [img]redface.gif[/img] )
thanks diane

[gigipark]

Diane, I am sorry that you felt "bashed" by the posts following yours. No one was bashing you. In fact, I was actually responding to Jill's post which followed yours - not yours. I agree that we should support each other, and I am supportive of what you are doing. Yes, you are making an effort to help other people and to share information. That's commendable. I'm sorry that you took the responses so personally. They were not directed against you. This is the last time I will address this as I don't think we need to go on ad infinitum. I am not apologizing for my opinions, but I am sorry that you felt "bashed." I hope that this does not deter your efforts. I'm sure that everyone on this list wants to "HELP" share info. on IC. To insinuate otherwise is, well, unneccessary. Let's put this to rest with some grace and respect. I do hope there will be no further hard feelings. I harbor none.

Gigi

[eyeluvbeanies]

no hard feelings here. sorry for lashing but i take this very seriously which im sure you can understand. take care and thanks [img]redface.gif[/img] )