Millions Suffer, Few Understand - IC/BPS Awareness Month
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IC Awareness Month unites patients from around the world who are TIRED of being disrespected, FRUSTRATED with a lack of medical care and CONCERNED about the high cost of treatments. What we do today has the potential to influence how IC patients in the future are treated. Do you want any more patients to be told that IC is all in their heads? Do you want more women to undergo completely inappropriate hysterectomies only to discover that their pain is coming from their bladders?? Do you want children with IC to be punished by their teachers for asking to use the restroom?? If not, then let’s do something about it TOGETHER!
Every patient out there should take a moment to look at their community, their state and country and ask themselves “what do we need here to better serve IC patients?” Are your doctors educated enough about IC? If not, then let’s try to change that by bringing an CME course to the area. Are community members and/or employers compassionate to the needs of patients? If not, then let’s try to get some stories in a local newspaper that encourage compassion and support.
Please join us in our IC Awareness Month activities today! - Jill O.
Watch The Video
Download Your Personal IC Awareness Month Kit
We've combined all of the essential documents and posters in a simple 7 page document that you can use to share press releases, print out posters, etc. etc. Download it here!
Ten Ways That You Can Help!
#1 - Raise Awareness With Social Networking
Please take a moment and announce that September is IC Awareness Month on your favorite social networking site! You can use the Facebook Profile & Timeline Pictures. Or, you can post our IC Daily Facts to help educate your friends and family members about the various issues that IC patients face.
#2 - Send Out Our Press Release to your local paper
One of the best ways to find patients who are suffering in silence is to ask your local newspaper to do a story on IC and IC Awareness Month. We've prepared a simple, two page press release that you can send to them, ideally with a paragraph about your own personal story. Newspapers love to discuss how lives have been changed, for better or for worse. You can use your own name or ask them to use a pseudonym. Use the press release in your kit above or print out the press release here!
# 3 - Put Up Our Poster
One of the easiest things you can do is just put up our poster at your local church, coffee shop or, better yet, send it to all of your doctors and ask them to post it so that other patients can learn about IC. Use the poster in your personal kit or print it out here!
#4 - Ask a radio station to do a public service announcement
Did you know that radio and TV stations love to do public service announcements? We've got three scripts that can be used for a simple, easy PSA to share info on IC. Sample public service announcements
#5 - Donate an IC book to your local library
If you tried to get information on IC and visited your local library, you probably found ZILCH! Yes, that's right, most public libraries do not carry books on IC unless a patient or a support group donates one or two. So, think about making a gift of a book to a local library! Click here for some book ideas!
#6 - Donate to a local support group or an IC research center
Donate to a local support group that is serving IC patients – They can use stamps, cash or even book donations for low income patients.
Donate to support IC research - Some patients prefer to make a donation in honor of IC Awareness Month to support IC research. We encourage you to donate directly to IC research centers and our choice is Beaumont Hospital in Royal Oak, MI.
Beaumont Hospital is the leader in IC/BPS research in the USA. Led by Ken Peters MD, their urology research efforts have uncovered dramatic new findings that are helping clinicians better treat IC. In Spring 2008, prolific IC researcher Michael Chancellor MD (botox, liposomes, neuromodulation) joined the team as their Director of Neurourology making this a truly dynamic research environment that will be exploring cutting edge technologies and therapies. Their Women’s Initiative for Pelvic Pain and Sexual Health (WISH) program is outstanding.
What makes Beaumont a great donation choice is their focus on the patient, their desire to improve patient care and their willingness to study elements of IC that few other research centers have explored.
Checks should be made payable to “Beaumout Foundation” and the Memo line of the check should say “Urology – Interstitial Cystitis (or IC) Research” They should be mailed to:The Beaumont Foundation, 3711 West Thirteen Mile Road, Royal Oak, MI 48073
#7 - Request a proclamation
You still have time to ask your local Mayor or County Board of Supervisors to declare September IC Awareness Month. We've made this as easy as possible with a prewritten proclamation that you can simply print out and send, with a note, to your elected officials! Use the copy in your kit or print it out here!
#8 - Wear Your Pride Year Round
IC patients love wearing bracelets and pins not only for IC Awareness Month but also year round to generate interest and/or to IC events! Awareness bracelets and pins
#9 - Writers! Participate in our daily IC Awareness Month writing topics run by Tali Kateri.
Every day there's a new theme or question, many funny and others more pensive and thoughtful, that ask you to write about how IC has impacted your life. We've done ten so far and the next twenty should be fun, thought provoking and designed to raise our personal insight and knowledge about IC.
- Day One - If you had to give your bladder a first, middle, and last name, what would it be? These can be as comical, serious, or quirky as you like! Use your imagination!
- Day Two - Submit a poetry or spoken word piece about something positive your IC struggle has done for you.
- Day Three - If your bladder had a theme song, what would it be?
- Day Four - Write an article/entry about what IC has taught you about yourself. What strengths or character attributes are now prominent in your life?
- Day Five - Every time you go to the bathroom to pee, .instead of focusing on the discomfort, pain, or annoyance associated with this very common activity, focus on the things in your life you are thankful for. No holding back! Everything goes!!
- Day Six - What do you know about your condition now that you wish you had known back then?
- Day Seven - Imagine that the world has fully accepted IC as a common condition. Doctors understand it and treat accordingly. Society can accept public awareness campaigns. Write a comical dialogue between you and a family member, friend, significant other, or medical professional about what goes on in your pelvic region on a daily basis.
- Day Eight - Write an entry about the absolute best memory you have after getting diagnosed with IC or after your pain began. The point of this exercise it to show that through all of the pain and suffering we, as humans with chronic conditions, are still quite capable of experiencing and then remembering the good things.
- Day Nine - Write a quick start ( summary) instruction manual for your bladder. Think of it like the little pamphlets you get when you buy a new hair dryer or drill. It’s the small one pager that explains how to turn it on and make sure you don’t kill yourself with it.
- Day Ten - Tell a newly diagnosed ICer what your primary resources are for finding out information about this condition. Tell them what, in your opinion, are the best places to look for reliable facts and that there are in fact, plenty of other ICers they can reach out to.
#10 - Enter Our Poster or Timeline Picture Contests!
We've already had a dozen entries but the deadline has been extended through the end of the month! Patients are truly having fun striking pen, ink, color and collage to paper to create fun, interesting IC Awareness posters and timeline pictures! The top three winners in each category will win $100, $75 or $50 gift certificates to the ICN Shop!
We especially need posters in Spanish, French, German, Japanese, Korean and Chinese!