The National Association of Nurse Practitioners in Women’s Health announced the launch of Interstitial Cystitis Awareness Week on 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," Susan Wysocki, President and CEO of National Association of Nurse Practitioners in Women’s Health, said. "Some IC patients describe throbbing, stabbing pains and muscle spasms that take their breath away."
Patients are commonly misdiagnosed with other pelvic conditions, such as endometriosis, recurrent urinary tract infections, and overactive bladder because of the similar symptoms.
AllAboutIC.com conducted a survey of IC patients. Ninety-five percent of respondents have felt frustrated with their condition, 75 percent have felt depressed, and 67 percent 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 of those surveyed (58 percent) said it took over a year to get the correct diagnosis.
“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,” Wysocki said.
National Interstitial Cystitis Awareness 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. Participate in National Interstitial Cystitis Awareness Week by spreading the word about IC.
Below are a list of events during National Interstitial Cystitis Awareness Week 2008
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
AllAboutIC.com • Updates to All About Interstitial Cystitis groups on
Facebook and
MySpaceTuesday, October 21
•
IC Week Podcast: “Interstitial Cystitis 101”
Wednesday, October 22•
IC Week Podcast: “Talk to your health care professional when the going gets tough” with WPWH’s Susan Wysocki
Thursday, October 23
•
IC Week Podcast: “When the going gets tough, Don’t let IC isolate you!” with ICN’s Jill Osborne
Friday, October 24• Check out real patient stories and encouraging words on
AllAboutIC.com