FOR IMMEDIATE RELEASE
September 1, 2014
September is Interstitial Cystitis Awareness Month
(Santa Rosa, CA) Have you been punished at work for asking to use the restroom? Employees of the WaterSaver Faucet Company face probing personal questions and termination if they use the restroom more than six minutes per day, according to a recent complaint filed with the National Labor Relations Board. This arbitrary standard can place a tremendous burden on dedicated, career employees who struggle with a prostate, bowel or bladder disorders, such as interstitial cystitis.
“Restroom access is a critical need for many of my patients who, if forced to wait, experience severe pain. The longer the wait, the greater the pain. Anxiety and worry naturally builds when people are watching and/or making comments about the number of bathroom visits needed” offered Robert Moldwin MD (Director of the Pain Center, Smith Institute of Urology, NY) and co-chairman of the NIH funded Multidisciplinary Approaches to Pelvic Pain Research Study. He continued “The final blow is the manager who places restrictions on bathroom visits based upon their own voiding habits (of course they usually void about four times a day) and who just can’t get the fact that someone can have a medical problem and look normal.”
This September, patients around the world unite to educate and raise awareness about interstitial cystitis / bladder pain syndrome (IC/BPS). The 2014 theme, “For Years We Suffered, Now We Stand Together”encourages compassionate restroom access, affordable therapies and improved medical care provider education.
Interstitial cystitis can be disabling. Hunner’s lesions and/or pinpoint hemorrhages are found on the bladder wall, allowing urine to penetrate deeply into the tissue. Inflammation then triggers symptoms of urinary frequency, urgency, pressure and/or pain, disrupting sleep, work and normal daily life. Simple tasks such as driving, sitting and intimacy can be painful.
“Another key goal of our 2014 campaign is to encourage patients to talk with their doctors if they cannot afford traditional therapies.” offered Jill Osborne, President of the Interstitial Cystitis Network. “The only FDA approved oral medication for IC, Elmiron® , can cost more than $600 per month for patients who lack health insurance, with no generic available.” Patients, particularly those on Medicare and Medicaid, hope that the manufacturer, Jannsen Pharmaceuticals, Inc. will hear their plea for a more affordable pricing structure.
The IC Awareness Month campaign encourages patients to be health activists in their community. They can distribute educational materials to physicians and clinics, design posters, start support groups, encourage their political representatives to issue proclamations, share their stories with local media outlets and donate to IC research centers.
Learn more about IC and the campaign by visiting our website, https://www.icawareness.org.
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Additional media materials, backgrounders, expert interview opportunities, and IC fact sheets are also available.
Contact: Jill Osborne, President Interstitial Cystitis Network – PO Box 2159, Healdsburg CA 95448 (p) 707.538.9442 or 707.538.9446 (f) 707.538.9444 (e) jill@ic-network.com
Founded in 1995, the Interstitial Cystitis Network (https://www.ic-network.com) is a woman owned, “social advocacy” health education company dedicated to interstitial cystitis and other pelvic pain disorders. Using the internet, we create innovative solutions to the pressing problems facing patients diagnosed with urologic conditions, medical care providers who care for them and the research community seeking new treatments and cures. For the past 18 years, we have provided critical 24/7 support to patients in need, developed new educational materials, conducted vital research, provided webinars/lectures and created IC awareness campaigns, all at NO COST to the patients who visit our website.