Helping women with chronic illnesses

Endometriosis Blog: More Information About Interstitial Cystitis Awareness Week

Here is more info on interstitial cystitis that was just emailed to me today by my local IC support group. Just click the links below for more information. Everything below is copied straight from the email I received:


There are a lot of good links here, but you need to go to each website to have them connect.

Copied directly from the IC Network’s email…

Interstitial Cystitis Network

It’s IC Awareness Week

Please join us in celebrating Interstitial Cystitis Awareness Week 2008, a week full of activities to help raise awareness for this little-known bladder condition and recognize the challenges of living with IC. This year’s theme is “When the going gets tough, could it be ‘123 IC’? Living with IC is tough. People with this painful and little-known condition need support and understanding. By increasing awareness of the symptoms most commonly associated with IC – Pain, Urgency, Frequency – which we call “the 123 of IC,” we aim to help people ask “could it be IC?” sooner.

This week, the National Association of Nurse Practitioners in Women’s Health (NPWH), the Interstitial Cystitis Network and Ortho Women’s Health & Urology invite you to participate in the following activities:

MONDAY, October 20

• A brand new documentary on interstitial cystitis, produced by Healthy Body Healthy Mind, will begin broadcasting on PBS stations across the country (PBS), a follow up to a documentary produced a few years ago. It will feature David Kaufman MD, Jeffrey Dell MD and IC patient spokesperson Terry-Jo Myers. Contact for your local PBS station for broadcast times or visit the Healthy Body Healthy Mind. You can also catch a highlights of the documentary in podcast form at: All About IC.

• “123 IC” contest winners & 2008 IC Ambassadors announced on All About IC

TUESDAY, October 21

• IC Week Podcast: “Interstitial Cystitis 101

WEDNESDAY, October 22

• IC Week Podcast: “Talk to your healthcare professional when the going gets tough” with NPWH’s Susan Wysocki on All About IC

THURSDAY, October 23

• IC Week Podcast: “When the going gets tough, don’t let IC isolate you!” with ICN’s Jill Osborne on All About IC

FRIDAY, October 24

• Check out real patient stories and encouraging words on All About IC

For more information, please visit: All About IC. Please check out our Facebook and MySpace pages.

Don’t forget to pass this on and help to spread the word!

Ortho Women’s Health & Urology sponsors this week to help raise awareness about IC.

Bring IC Awareness Week To Your Local Community

A formal press release has been created for media outlets. Click here to view! I encourage each of you to share this by email with your local newspapers. Ask the health or lifestyle editors if they will do a story on IC in your community and, better yet, consider sharing your personal IC story with them. If you get interest, please let the editors know that the ICN would be happy to provide quotes, background information and more to help make that story a reality. They can contact Jill directly at: or by calling (707)538-9442.

IC Support Leader Recognition

IC Awareness Week is also the perfect opportunity to express our thanks to those people who have made our journey so much easier, the local IC support group leaders. Talk about unsung heroes. IC support group leaders often work, with little or no help, to make meetings happen in their communities. They spend hours with patients in need on the phone or at the hospital. They raise awareness with their local newspapers. The advocate for the needs of IC patients with local doctors and the medical community. All for no pay and with little, if any, recognition. They are, in our opinion, the most important part of the IC community because they work at the local level and directly with patients.

When a support group leader finally retires, we have to make sure that they know just how important their efforts were. Case in point and one of my personal IC heroes, Molly Glidden, long time Boston support group leader who is stepping down this month. I’d like to take a moment to say “Thank You” to Molly for being such a great friend, for always being willing to help so many other patients and for working with me, behind the scenes, to offer support to some patients who were very, very ill. Molly is the epitome of a kind soul and she, along with countless other past and current support group leaders, deserves our recognition for a job very well done. Thank you for everything you’ve done Molly. You’re an IC hero!

We’d also like to say a fond farewell to Alice Terry who has, for many years, run the IC Support Group of Australia. She published their national IC newsletter and helped spread the word about IC throughout that country. That group is now being run by Dr. Katya Buc Stooke (Contact details below).

So please join us in using IC Awareness Week to thank your local IC support group leaders!! Give them a call, send an email, card or flowers. Better yet, ask if they can use some help in 2009! Remember, they can’t do it all by themselves. The more hands and minds involved the better!”

AND THIS….copied from ICA’s email news:

The website address follows:

Interstitial Cystitis Association

“The Interstitial Cystitis Association (ICA) would like to inform you about three exciting events sponsored by other groups that are taking place in the coming weeks. While these are not ICA-sponsored events, we thought these activities might be of interest to you.

Interstitial Cystitis Awareness Week 2008 October 20 – 24, 2008

The National Association of Nurse Practitioners in Women’s Health (NPWH, a non-profit organization), Ortho-McNeil (the makers of Elmiron), along with the Interstitial Cystitis Network (ICN, a for-profit publishing company), invite you to participate in a week full of activities to help raise awareness for IC and recognize the challenges of living with it.

Click here to find out more about the 123 IC Campaign.”

This article was posted by Jeanne via “Jeanne’s Endo Blog” at

This post was written by Jeanne at Copyright © Jeanne — All rights reserved.

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Reading: Endometriosis Blog: More Information About Interstitial Cystitis Awareness Week


1 Jannie Funster { 10.23.08 at 2:44 am }

Boy you really know your stuff, Jeanne. Thanks for researching all this!

2 Jeanne { 10.23.08 at 3:00 am }


Thanks! I’ve had IC since 1992. So learning this stuff has become “survival” for me. 🙂

It took me 12 years to find a doc who would diagnose me with IC even though I had all of the classic symptoms.

After 4 cystoscopies, I finally got the correct diagnosis.

With proper treatment, my IC symptoms are doing much better. (I’m planning a post for tomorrow that will elaborate on my situation with IC a bit).


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