Newswise — (Santa Rosa, CA) “We Stand Together” is the theme for the September 2012 Interstitial Cystitis & Bladder Pain Awareness Month campaign (http://www.icawareness.org) uniting patients from around the world in asking for respect, compassionate care and a cure for this often disabling condition.
“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” offered national IC expert Dr. Robert Moldwin (Smith Institute of Urology, NY). He continued “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 is undeniable. It can be a devastating blow to their quality of life!”
An IC bladder is, essentially, a wounded bladder. Patients may have pinpoint hemorrhages or larger Hunner’s ulcers. Urine enters the wounds causing inflammation and/or pain. In addition to the search for new therapies that can help heal the bladder wall, researchers are trying to determine why patients often suffer from other, related conditions including: irritable bowel syndrome, endometriosis, chronic fatigue, chronic headache and TMJ. An abnormal pain processing or nerve hypersensitivity disorder may be part of the problem. In late 2011, the National Institutes of Health convened a multidisciplinary Working Group on Chronic Overlapping Pain Conditions to help unravel this mystery.
Despite millions of dollars invested in research, studies which prove that IC/BPS exists in 3 to 8 million women (and 1 to 4 million men) in the USA, and the US Army tracking higher than normal levels of IC in active duty personnel, many health care providers still demean new patients by suggesting that IC is “all in their heads.”
“Patients often live a life of quiet desperation, desperately seeking physicians who will believe them, treatment to relieve their discomfort, family members who will support them, employers who will accommodate their need for restroom access and food that they can safely eat without irritating their bladders.” offered Jill Osborne MA, President of the IC Network.
The annual IC Awareness Month campaign empowers patients to take action and educate their community. They can distribute educational materials to physicians and community clinics, start local support groups and reach out to patients in need in their community. Additional media materials, video, backgrounders, expert interview opportunities, and IC fact sheets are also available.
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