When the Going Gets Tough, Could it be ‘123 IC’?
Patients & advocacy groups rally online and through social networking to bring new hope to people with Interstitial Cystitis (IC) during the first-ever IC Awareness Week, October 20-24, 2008
WASHINGTON, D.C., October 20, 2008 – The National Association of Nurse Practitioners in Women’s Health (NPWH) today announced the launch of Interstitial Cystitis Awareness Week, October 20-24, 2008. This week of activities, planned in partnership with the Interstitial Cystitis Network (ICN) with the support of Ortho Women’s Health & Urology™, aims to raise awareness of this painful bladder condition and demonstrates the transformative power and support that new communications technologies can provide for small patient groups.
An estimated one million Americans suffer from interstitial cystitis (IC), a painful, and often debilitating, chronic condition in which the bladder lining becomes irritated and inflamed. The condition mostly affects women, who make up an estimated 90 percent of IC patients. “Imagine you have a deep paper cut that you pour an acidic liquid onto, continuously. That is only a fraction of what many IC patients feel in their bladder and pelvis on a regular basis. Some IC patients describe throbbing, stabbing pains and muscle spasms that take their breath away,” says Susan Wysocki, President and CEO, National Association of Nurse Practitioners in Women’s Health.
NPWH and ICN share a strong commitment to raising awareness of IC because it is neither a well-known nor well-accepted medical condition. The symptoms of IC – pain in the pelvic area, going to the bathroom urgently or frequently, and pain during or after sex – are easily mistaken for other pelvic conditions such as endometriosis, recurrent urinary tract infections and overactive bladder.
“Research shows that most patients consult at least five physicians, including psychiatrists, over a period of more than four years before being diagnosed with interstitial cystitis. This is devastating. No one should have to suffer in silence for so long,” adds Wysocki. “By increasing awareness of the three 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.”
Treatment approaches differ from one patient to the next, but most IC patients find success with a combination of dietary modifications and medication. IC patients should avoid acidic foods and drinks as well as carbonated, caffeinated, and alcoholic beverages. Others have success with medical therapies like ELMIRON® (pentosan polysulfate sodium), the only FDA-approved oral medication to relieve the bladder pain or discomfort associated with IC. In addition, medications to ease pain, reduce night-time bathroom visits, aid in sleep, and block the effects of allergens may also benefit IC patients.
New ways to connect a small determined patient community
Given the complications of getting diagnosed, IC patients have gone online in large numbers in recent years, seeking support and information from other patients. There are currently hundreds of national and state-based IC support groups online as well as groups on MySpace, Facebook, Revolution Health, DailyStrength, and many other online communities.
“Providing access to information is the number one way to ensure that IC patients get the support they need,” says Jill Osborne, founder of the Interstitial Cystitis Network and the first to recognize the IC community’s need for online support and information. “The ICN is really pleased to be a part of IC Awareness Week 2008 – a week full of online videos, webinars, podcasts, and other digital communications, with important information on how to diagnose, treat, and live with IC. This would not have been possible five years ago.”
IC Week 2008 activities started in September with a grassroots viral campaign to spread awareness of ‘123 IC’. The campaign attracted almost 1300 signatures to the petition of support and encouraging words from 389 patients across 45 states.
This week, NPWH, ICN, and Ortho Women’s Health & Urology™ invite you to participate in the following activities:
Monday, October 20
• PBS “Healthy Body, Healthy Mind: Interstitial Cystitis” special begins to air nationally. Check local listings for more information
• 123 IC contest winners & 2008 IC Ambassadors announced on www.AllAboutIC.com
• Updates to All About Interstitial Cystitis groups on Facebook and MySpace
Tuesday, October 21
• IC Week Podcast: “Interstitial Cystitis 101” on www.AllAboutIC.com
Wednesday, October 22
• IC Week Podcast: “Talk to your healthcare professional when the going gets tough” with NPWH’s Susan Wysocki on www.AllAboutIC.com
Thursday, October 23
• IC Week Podcast: “When the going gets tough, Don’t let IC isolate you!” with ICN’s Jill Osborne on www.AllAboutIC.com
Friday, October 24
• Check out real patient stories and encouraging words on www.AllAboutIC.com
For more information, please visit: www.AllAboutIC.com
Ortho Women’s Health & Urology™ is a Division of Ortho-McNeil Pharmaceutical, Inc. AllAboutIC.com is published by Ortho-McNeil Pharmaceutical, Inc.
About NPWH
The National Association of Nurse Practitioners in Women’s Health was founded in 1980. NPWH’s mission is to assure the provision of quality health care to women of all ages by nurse practitioners. To this end, NPWH works with a wide range of individuals and groups within nursing, medicine, the healthcare industry and the women’s health community.
About ICN
The ICN is an online resource owned and managed by Jill Osborne. The goal of ICN is to provide valuable and timely information and support resources for patients, physicians and researchers who are working to further the IC cause. ICN currently reaches more than 300,000 IC patients each month.
* Ortho Women’s Health & Urology™ is the sole sponsor of Interstitial Cystitis Awareness Week 2008. NPWH and ICN were provided funding to cover the time related to their involvement in these program activities to raise awareness of IC.
About Ortho Women’s Health & Urology™
Ortho Women’s Health & Urology™, Division of Ortho-McNeil-Janssen Pharmaceuticals, Inc., is a leader in the fields of women’s health and urology, celebrating more than 75 years of partnering with women. Ortho Women’s Health & Urology™ is committed to helping people live healthier lives and to provide products to help meet the needs of healthcare professionals and patients. For more information on these products, birth control, bladder health or general women’s health issues, please visit www.orthowomenshealth.com.
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