Why can't we have major media support?

[liz2]

One channel of my TV has been tied up almost 24 hours with Jerry Lewis' Telethon. I don't deny that MD needs advocates, but I am angry. We, too, need our advocates, and we desperately need research money. I bet if we had as much money as Jerry's kis have donated to them, we would have a cure. Especially since that money has been flowing for almost 50 years.

Since we aren't physically disfigured, etc., we don't get media play. Our pain is just as bad as theirs, and I bet many of us are as severely limited physically and emotionally--it just doesn't show.

I read in my "Parade" magazine that many of Jerry's kids go to summer camp, paint, sing in a choir, ride horses, etc. **** I can't do any of that. I have to chose what part of the church service I am going to attend, as I cannot sit in the pew for an entire hour. I wonder just how many children have IC or a precursor to IC. I know I did. Maybe we don't die young like MDers do, but I bet we match them in suffering.

**** we can't even get Oprah to listen to us. Sorry for venting, but this is not one of my better days and I feel cheated! :mad:

[darlene]

liz, Oprah's staff must have read some of the letters and e/mails from ICers. We may want to believe the show is about helping people, but the staff is probably concerned about ratings. Those shows about makeovers that we think are useless get people to watch. Oprah wants us to believe we can do and be anything we want if we try hard enough. If her staff read any of the posts about people grieving for the person they used to be ,or would never become, they would be turned off. I just hope if any program about IC is on the air , that the whole truth can be told, and it won't be sugarcoated for ratings.

[liz2]

Darlene, I agree with what you have said. I also think the pro-golfer on TV is sugar coating things and making people believe there is an "easy fix." To me, she is doing more harm than good. Elmiron is her key benefactor; my uro gave me the Elmiron video to watch. She comes out loud and strong for Elmiron on it. IC treatment for most of us involve a lot more than taking Elmiron. :eek:

[Drama_Queen16]

I agree with both of you. I would hope that if any other public figures are diagnosed with IC, they will tell it like it is. Even ICer's that find Elmiron to be a great help have to realize that it just isn't that easy for everyone.
I have had IC since I was 6 or 7 and I was never able to do any of those things either (go to camps, outings, etc. - even ones especially for ill or disabled children). Nothing can accomdate IC.
I think we get overlooked by the media because we're not out there actively taking part in all this stuff - but it's because we CAN'T. If anything, we need research moeny even more for this reason.

[icnTerri]

Has everyone signed the Petition (http://www.petitiononline.com/icers/petition.html) ? :D

We also have LOTS of fundraising activities and letter-writing campaigns we are working on over at www.icaprilshowers.org, (http://www.icaprilshowers.org,) and have raised $550 for research so far. :D

Just thought I'd throw in a bit of good news,
Love,
Terri
I believe it'll have to be us.
~*~Wishing you many moments of peace~*~

[darlene]

Thanks for telling us about the petition. I am proud to be number 1328, and hope others will follow.

[liz2]

Thanks for telling us about the petition; I signed it too.

[Veronica]

I think we all have to keep writing, venting, talking, etc...about IC. Not just to our fellow ICers, but to the world.

I agree with some of the above statments that on the rare chance IC is mentioned it is made to sound like it's easy to fix.

I just submitted and IC article to a local health magazine, so if I hear back I'll let you know.

I'm also con't to collect info, and stories for the IC book I'm working on.

One ICer in California has been great about having her large support group fill out questionares for me. And Thanks to many of you who have e-mailed me your stories!

Veronica

[lady]

Terri,
I want to thank you for telling me about the petition. I am happy to let you know i signed the petition!!!!
Hugs
I hope you have many pain free days! :)

[Katrina]

Thank you very much Terri for telling us about he petition. My husband and I both signed it and I sent to site to good web buddies. Thank you.

Faith, hope, and love,
Katrina :)

[Patrice]

Has anyone thought of contacting Discovery Health Channel? They have 24 hours a day of medical stuff. Maybe they would do something about IC.

[Jazzy Baby]

I just wanted to let you know that you can email discovery network health at..... comments@discoveryhealth.com

I just wrote them a very long letter, and I told them that if they needed anymore info to come to this website!!!! I say everyone blow them up. Maybe this one will work, eh!!!!! :D :D :D :D :D :D

[marie22]

Discovery Health did a show on chronic pain and I watched it hoping they would mention IC. They mentioned Fibromyalgia, chronic headaches, and endometriosis but, not IC. IC is not that rare. A lot of people have it. I don't know why nobody ever talks about it at all. It makes me so mad! Maybe some of the clueless doctors would recognize IC more if they would do some shows on it something! I think I will write Discover Health too. We need someone to recognize this painful disease!!!

Marie

[Nina37865]

I agree! We need media support! I have been reading Dr.Moldwin's book and he says that IC is even more common than Parkinsons,muscular distrophy and Hemophilia!
Why then, do we suffer for years with no diagnosis? Nina

[ldwall]

From recent up close and personal experience with the media I can tell you it won't happen until it becomes news. It won't become news until someone famous gets it, a major public relations campaign gets started, or there is a major break through in IC treatment that also has a good public relations team behind it. We won't get on a talk show because the hosts (montel etc) don't ever get to read that kind of mail. It goes to a pruducer that puts it in a pile of story ideas, then a group of producers decides on a show based on the ratings it needs to get. If we want major media support we need a public relations campaign plain and simple.

Sorry to burst everyones bubble, but unfortuantly there has to be something sellable to make it news. I am news because everyone wants to feel like they are related to sending someone to war, in reality they ain't doing a damn thing, I am.

The solution here is to try to find a way to do a public relations campaign, or to join one already in existance and to use that to get the word out.

L

[ragsmom]

Liz2,I can appreciate where you are coming from re:Media to IC.
I had been dx with IC 3 yrs ago and I have been lucky to be able to keep in check with meds and diet.Not saying that I do not have a flare or bad days,I do.
Terri,has given you some good info re:IC Fund Raising for which I have active in but not lately but I will be back to help Terri
in what ever way that I can but we need others to get involved with us.We cannot do it ourselves.
Now back to the reason that I have replyed to this post re:Jerry Lewis' Telethon.
I felt the same way as you until I was Dx with Ocular Myasthenia Gravis/General Myasthenia Gravis.
This disease is one of the FORTY neuromuscular diseases that is in the Muscular Dystrophy category and the funds are shared between all of the forty neuromuscular diseases.
Ocular MG deals with the eye and facial muscles(Ptosis...drooping eyelid,sometimes to the point of the covering the retina.
My right eye goes to the outer part of the eye.My vision is sometimes blurry/double vision.I become very sob when walking because the diaphragm muscle is weak and sometimes a crisis may occur when you have to go to the ER(so far I have been lucky)
The muscles in my arms,legs,hands become weak.I have fallen twice so far because I foolishly tried to do more physically then I should have been doing.I need rest frequently when I feel tired but it is hard to accept that I have this disease which may or may not put me in a wheelchair in a year or so.I will fight this.
Now you see that all of that money does not go just to MD.
They provide wheelchairs and other equipment that may be needed but cannot afford to pay.
So now we need to deal with IC and bring it forward to the Public.Any ideas are welcome but we have to realize also that this country is in a crisis and the media is now focusing on that.But we will keep trying!!
I pray for peace and one day we will be able to eradicate all of the diseases with possibility through Stem Cell Research.
To everyone "United We Stand,Divided We Fall"
prayers and gentle hugs to all with Chronic Illnesses. delores saulswife@yahoo.com

[fmcilwee]

I was wondering the same thing about Oprah, as many shows as she does, You would think she would try to help us This disease is very degrading physicllay and mentally. [quote] <hr></blockquote>

[karhopp]

Pamela Sue Martin of "Dynasty" had IC, and although I didn't see it, she was on TV about it. That's what I read somewhere, anyway. Karla

[ihurttoo]

I just now saw this petition to help fund IC research. I hope everyone sees this and will sign it too. My husband, mother, and myself have all signed it, and I will also ask everyone else I know to sign this as well. It only takes a moment, but it is so important for all of us! Thanks, Amy