Newswise — (Santa Rosa, CA) “Breaking The Silence of Interstitial Cystitis” is the theme for the September 2011 IC Awareness Month campaign, encouraging compassionate treatment for patients who often face criticism and shaming from medical professionals and/or family members who do not believe the condition is real. An “invisible illness,” most IC patients look normal and healthy despite suffering from severe urinary symptoms and/or pelvic pain.
Children and teens with IC have been accused of seeking attention and denied access to restrooms in schools. Young adults may face accusations of having sexually transmitted diseases. Men and women are often told that their symptoms are “all in their heads.” This campaign strives to remove shame, blame and isolation that patients often struggle with.
National expert and researcher, Dr. Robert Moldwin (Long Island University) offered “IC patients struggle with symptoms very similar to those of a bladder infection including urinary frequency, a constant sensation of urgency, pressure and/or pain as their bladder fills...yet their urine cultures are negative. You can just imagine the frustration and the profound effect this condition has upon the patients' ability to function at work, their ability to socialize, travel, and even upon their sexual function. It can be a devastating blow to their quality of life!”
The cause of IC is unknown though research released earlier this year from Northwestern University suggests that one strain of e-coli (UPEC) may trigger a “pain response” that persists after the infection has been treated and bacteria is no longer found in the urinary tract. Other patients report that their symptoms began after a pelvic trauma or surgery. Genetics may also play a role for some patients. Tragically, a growing number of young adults around the world have developed IC like symptoms after using ketamine, a drug popular at raves and parties.
Earlier this year, the American Urology Association issued new Guidelines for the Diagnosis and Treatment of IC/BPS that offer a new five point treatment algorithm, including various oral medications, bladder instillations, physical therapy for pelvic floor muscle tension, experimental treatments and neuromodulation. Diet modification and the avoidance of high acid foods such as coffees, teas, green teas, sodas is beneficial for many patients.
Interstitial Cystitis Network Founder Jill Osborne offered "With our IC Awareness Month campaign, we hope to break patients out of the silence and embarrassment that often comes with this illness and into empowerment and action. Physicians of various specialties need to learn more about IC so that patients are treated promptly and with compassion. Family members should be offering support and encouragement. Restroom access should be provided whenever possible. ”
Our website (http://www.icawareness.org) provides tools and resources that patients can to make a positive change in their community, including various educational resources, posters, sample proclamations and the creation of CME training events. Patients are encouraged to start local support groups and to reach out to patients in need in their community. Patients without health care coverage can find a searchable database to locate free or affordable medical clinics and drug assistance programs. Additional media materials, backgrounders, expert interview opportunities, and IC fact sheets are also available.
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