Interstitial Cystitis Awareness
Wednesday, September 14, 2011 at 04:00PM
September is Interstitial Cystitis Awareness Month
In the U.S. Alone, More than Three Million Women & More than One Million Men Struggle With This Misunderstood Condition
Every year, September is Interstitial Cystitis (IC) Awareness Month. This year’s theme is “Breaking The Silence,” to dispel myths about IC, communicate the truth of its impact, and encourage compassionate treatment for IC patients who commonly face criticism and shame. Lack of medical research, funding, and public awareness for IC regularly causes patients to interact with doctors or family members who either do not believe IC is real, do not understand the radical quality-of-life deterioration for IC patients, or cannot provide adequate care, solutions, or treatments for IC sufferers. Since IC is an “invisible illness” or “hidden disability,” most IC patients look normal and healthy, despite suffering from severe urinary symptoms and pain. Even school and work become unrealistic goals for IC patients.
Unlike other illnesses that garner more public awareness, activism, and funding, IC remains in the dark, under-funded, and under-researched for many possible reasons, not the least of which may be IC sufferers’ desire to retain their dignity and privacy. They are afflicted with a condition that affects one of the most intimate, private, and basic functions of the human body—a bodily function that billions of people the world over never have to think twice about.
Tragically, the 2011 federal budget cuts caused a 50% funding cut to the only non-profit organization dedicated solely to IC, the Interstitial Cystitis Association (ICA): “A federal grant funded through the Centers for Disease Control and Prevention (CDC) IC Program provided approximately 50 percent of the ICA’s budget. We recently learned that because of the fiscal 2011 federal budget cuts, the CDC eliminated funding for the IC program and that the ICA will not receive this grant funding.” More information regarding this leap backward for IC funding is available at https://www.ichelp.org/SSLPage.aspx?pid=590.
National expert and researcher, Dr. Robert Moldwin (Long Island University) describes that “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!”
What does it mean when a urine culture is negative? It means no bacteria are in the urine. Absence of bacteria means the patient cannot be given antibiotics to cure an infection, because there is no infection present to cure. If IC symptoms are similar to a bladder/urinary tract infection (UTI), but can’t be treated with antibiotics, then how is the patient cured from their bladder pain, burning, constant urinary urgency, and incessant frequency? Answer: While UTI patients can be cured from identical symptoms with antibiotics, the IC patient can’t be cured at all. Those UTI-like symptoms stay with IC patients every day for the rest of their lives. IC has no known cure, no known cause, and it decimates the lives of millions in the U.S. alone.
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. For adults, the impact IC has on sexual function may cause marital problems, and even divorce. Female IC patients face a history of being told their symptoms are “all in their heads.” This campaign strives to set the record straight.
The cause of IC is unknown, though research into prostatitis 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, surgery, or infection. Some patients have suffered a history of curable UTIs in their lives, which may contribute to a pattern of bladder trauma that makes them susceptible to IC. Genetics may play a role for some patients, and there are current studies investigating this theory further. A growing number of young adults around the world have developed IC-like symptoms after using ketamine (a drug nicknamed “Special K”), which has been shown to cause ulceration of the bladder wall, as well as some kidney damage. Many others have suffered since childhood with IC, not discovering until later in life that their condition has a name, a diagnosis, but no cure. And still in other cases, the acute onset of IC occurs in patients’ adulthoods, altering their lives after decades of being healthy and normally active. Their lives change suddenly, completely, and forever.
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.”
Please note that the official color for IC Awareness is blue, and we invite you to wear blue during the month of September and show support for this cause!
Additional Resources:
2011 “Breaking the Silence” IC Campaign Website
Interstitial Cystitis Association: Only non-profit organization dedicated solely to IC
Interstitial Cystitis Network: Health education company dedicated to IC
Jill Osborne, President
(PH): 707.538.9442 or 707.538.9446
(E) jill@ic-network.com
*Press Release Adapted from Jill Osborne, IC Network
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