IC Awareness Week: October 20-24, 2008

Think about it: the more we can educate others about this condition, the less likely people will suffer in silence.

Join with others who are living with IC by learning about and getting involved in these IC Awareness Programs. Also, share this Web site with a friend.

When the going gets tough, could it be "123 IC"?

If you have IC, you understand that living with it can be tough. Unfortunately, many people still do not know about IC or understand how debilitating it can be. The first-ever IC patient survey conducted in 589 patients in 2007 confirms the emotional impact of IC and demonstrates the long journey to diagnosis.

• 95% of respondents have felt frustrated, 75% have felt depressed, and 67% felt isolated and embarrassed.
• One third of respondents reported being told their condition may be psychological, and one fifth said they had been referred to a mental health professional.
• More than half (58%) said their IC diagnosis took a year or more.
• More than half (56%) reported seeing three or more healthcare professionals before diagnosis of their IC.

IC Week 2008 acknowledges the daily struggle to manage this painful and little-known condition and aims to raise awareness for it by sharing information, insights and experience from those living with IC. We hope that you will participate and help spread the word.

IC Awareness week is sponsored by Ortho Women's Health & Urology™, the National Association of Nurse Practitioners in Women's Health (NPWH), and the Interstitial Cystitis Network (ICN).

IC Awareness Week Podcast Series

Listen to one of our feature podcasts to learn more about IC.

Interstitial Cystitis 101
Learn the basics about IC from leading experts, including IC symptoms, causes, diagnosis, and treatment.  This is an excerpt from PBS’s “Healthy Bodies, Healthy Minds” special on IC. Sponsorship was provided by Ortho Women's Health & Urology™.

Talk to your healthcare professional when the going gets tough
NPWH president Susan Wysocki shares tips and talking points to help shorten your path to diagnosis and better treatment.

When the going gets tough, don’t let IC isolate you!
ICN founder Jill Osborne discusses things you can do to maintain healthy relationships with spouses, colleagues and family members if you have IC.

Other IC Resources

The Challenge of Managing Interstitial Cystitis
Diane A. Smith discusses the challenges associated with interstitial cystitis.

The "123 IC" results are in!

IC Week 2008 activities started in September with a grassroots viral campaign to spread awareness of the 3 main symptoms associated with IC, which we call the "123 IC" Pain, Urgency & Frequency.

The campaign attracted almost 1300 signatures to the petition of support and encouraging words from 389 patients across 45 states.

OWHU, NPWH & ICN would like to thank all the people who participated in the "123 IC" awareness campaign and announce the winners.

Congratulations to the "123 IC" iPod® winners

J. Malloy – Alta Loma, CA
J. Sullivan – Surprise, AZ
Tennessee Winner – Nashville, TN

Meet the 2008 IC Ambassadors

S. Murphy
"My advice to anyone with IC is to trust in yourself and your body. Don't take brush-offs and keep voicing your concerns until you are heard. Living with this condition is hard, but manageable and for every bad day there are two good ones. I was devastated to be diagnosed but relieved that I had answers. Most importantly I consistently remind myself that I will see my children grow old and there are a so many people out there who are diagnosed with illnesses and disease which mean they will never see their children grow up... I don't see myself as the unlucky one, I am lucky because I can live with this disease and I hope that one day in my lifetime there will be a cure."

C. Gilbert
"IC does not have to control your life...I have IC but it doesn't have me! I manage my disease and continue to work a full time job and attend college in the evenings. I refuse to give up my life. Instead through a process of trial and error, I have and am constantly learning to managing the many variables of IC and take care of my health so I can maintain my life. I've been at it for 6 years and I learn and grow everyday. Don't give up...IC is painful, discouraging and frustrating but learn to appreciate small gains over its symptoms and continue to celebrate life!"

S. Hamilton-Budic
"I have had IC for 6 years and found relief after about 1.5 years. Now, I watch my diet, take my medications and live my life!!!!!!!! There are still days when I can feel the reminders of IC - and it takes me back to the dark hours of my early diagnosis, but those days are fewer now and I can do most of the things I used to do!! Read as much as you can, ask questions, use the IC network message boards. Those women on the message boards are a Godsend. They will help you make it through the most difficult times!!! Above all, be responsible and pro-active about your own health care! My best wishes go out to all of you - I hope you find relief!"

For Media
IC Awareness Week 2008 Press Release

First Ever IC Awareness Day: October 31, 2007

Through the partnership of Ortho Women's Health and Urology™, the National Association of Nurse Practitioners in Women's Health (NPWH), October 31, 2007 was designated the first ever National IC Awareness Day. This inaugural annual awareness day was recognized by the U.S. Department of Health and Service's 2007 National Health Observance Calendar.

In 2007, awareness efforts aimed to generate patient awareness of IC and its symptoms and raise awareness about the physical and emotional burden of the IC. In addition to a range of media efforts, the day marked the release of results from the first-ever IC patient survey.

IC Awareness Day 2007 was a success for thousands of patients who participated, helping them begin to fight the isolation, embarrassment and/or frustration many IC patients experience through sharing and support.