September is IC Awareness Month - www.icawareness.org
We need to reach those patients who are suffering in silence and give them hope. We need to educate doctors who are still treating IC out of old textbooks that new treatments are available. We need to educate our community leaders and government representatives that our need for rest room access is legitimate and vital!
So, how do we do this? Through people like YOU who believe that patients deserve kindness, compassion and better care. IC Awareness Month is the ultimate grass roots campaign. There's no big pharmaceutical company backing this.. it's driven by patients who truly believe that we deserve a better future!
We invite you to participate! Here's how you can help!
NOMINATE YOUR DOCTOR or PHYSICAL THERAPIST
Do you have a doctor or physical therapist who treats you wonderfully? This year, we want to encourage and acknowledge clinical care providers who provide excellent care for IC and pelvic pain patients. This includes urologists, OB-GYNs, physical therapists, nutritionists, pain specialists and so forth. These are the medical care providers who:
- listen to their patients
- who take the time to answer questions
- who explain treatment choices carefully and thoughtfully
- who treat patients and family members with dignity and respect
- who give their patients hope and encouragement
It's about time that we publicly recognize those few doctors who really do treat IC patients with compassion and kindness! Each nominated clinician will receive a lovely certificate. We will select one doctor to receive "Doctor of the Year" award and one physical therapist to receive "Physical Therapist of the Year" award. These will be based on the most nominations received! Learn more or make your nomination here!
SHARE OUR DAILY FACT
Help us educate others about IC and pelvic pain. We hope that you'll share it through your social networking channels, especially Facebook, Twitter, Pinterest, Instagram & Linked in! . Our facts have been updated for 2015!
One of the ways that we raise awareness about IC is through our IC Awareness Month Poster Campaign. When they are displayed in doctors offices, it reminds clinicians that IC is real and patients that they are not alone. The problem, of course, is that we don't have a big pharmaceutical company paying to print up posters and mail them to doctors. It'll only take a minute to print it out and then drop it in the mail or hand deliver it to your doctors offices. IC Optimist subscribers can also cut off the back cover of their Summer issue and use that as a poster.
Most locations are respectful of and encourage health awareness campaigns. Ask them first if they will post it and, if not, save it for another location that will. Once it's up, please take a picture of it up on the wall and send it to us, or tweet (@icnjill or #icawarenessmonth) or Facebook it!
- Doctors offices, Health Clinics, Hospitals
- Public Libraries
- Community Bulletin Boards
- School Nursing Offices
- Neighborhood Coffee Shops & Gyms
DARE THE PRESS TO COVER IC
Ask your local newspaper to do a story on IC and IC Awareness Month. We've prepared a simple, two page press release (featuring Dr. Ken Peters) 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. Download the official press release and media fact sheet here!
POSTER CONTEST NOW OPEN
WINNERS WILL RECEIVE A KINDLE FIRE!
Bring out your inner artist and create a poster for IC Awareness Month sharing your own interpretation of life with IC. Have you children make their own poster with your choice of medium: digital, watercolor, crayon, markers! Your choice! All posters will be added to our website and the winner will receive a Kindle Fire Pad! Learn more and see poster samples here!
MEME CONTEST NOW OPEN
WINNERS WILL RECEIVE A KINDLE FIRE!
Funny, irreverent, witty, bold and often ridiculous, meme's make a statement. A funny or shocking meme can be shared thousands of times across the internet where they could inspire patients to actually google IC. Last year, Tali Keteri created a fabulous meme contest that broke records and we're doing it again this year.
Memes are easy to make! Just go to: http://www.someecards.com, pick your image and play! Use #icawarenessmonth and share your meme on Facebook, Twitter, Pinterest and anywhere else you frequent. Also e-mail it to firstname.lastname@example.org.
If you have room, make sure that your meme says: icawareness.org
HIT UP LOCAL RADIO & TV STATIONS
Radio and TV stations love to do public service announcements! We've got four scripts that can be used for a simple, easy PSA to share info on IC. Sample public service announcements
PENNIES FOR IC RESEARCH CAMPAIGN
The "official" IC Awareness online fundraising campaign is "Pennies For IC Research" run by IC patient Lisa Herman. She is asking members and friends of the IC community to place an empty jar somewhere in your home where it will be easily accessible. Place any spare change from your purse, wallet, etc. into the jar. Encourage your family members to also drop their spare change into the jar! Take your change to your bank, coin counting machine, etc. and see how much you (and your family) were able to raise for IC Awareness. All donations are sent directly to two IC research centers: Beaumont Hospital (Royal Oak, MI) and Boston Children's Hospital C. Learn more about it and/or make a donation here!
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!
GET POLITICALLY ACTIVE
Political action is a necessity when the vast majority of research dollars come from national governments, like the US National Institutes of Health. We MUST advocate for additional research funding throughout the year. During IC Awareness Month, you can also request proclamations from local, state, provincial and national government representatives. By asking for a proclamation to be issued in honor of IC Awareness Month, you're educating your public representative about IC and asking for their support. Patients have requested and received dozens of proclamations over the past few years and we've made it really easy. Simply download our sample proclamation and send it to the politician of your choice. Learn more here!
START A SUPPORT GROUP OR SUPPORT ONE NEAR YOU!
Donate to a local support group that is serving IC patients – They can use stamps, cash or even book donations for low income patients. If there's no group near you, please start one. Learn how in the ICN Support Group Resource Center.
EDUCATE OTHERS WITH OUR NEW IC FACT SHEETS
The ICN has developed a new series of fact sheets for 2014. Share them with your family, friends and medical care providers here! Free downloads here!
IC AWARENESS BLING!
Wear your pride with our official IC Awareness Month pins, silicon bracelets and, in next week, IC Awareness Month Car Magnets. Available in the ICN Shop!
Summer/Fall 2015 IC Optimist Now Available
In this issue:
(1) Editorial: Preventing Restroom Discrimination In School – When a mother discovered that her child was afraid to use the rest room at school out of fear of punishment, she was irate. Imagine her anger when her child had to have emergency surgery for a bowel blockage. She sued. That a school would hold children to a higher standard than adults is utterly ridiculous.
(2) Feature Story: The New Paradigm for Treating IC – Do you know your phenotype? – Drs. Christopher Payne and Jeanette Potts have created a new paradigm for IC and pelvic pain treatment that should change the future of how IC is treated. He suggests that patients fall into five key phenotypes and that patients treatments should be customized for specifically for their case. No wonder so many research studies failed. Would a pelvic floor dysfunction patient respond to a bladder treatment? No! By the end of this article, we hope that you'll be able to determine yours too.
(3) Meet The IC Expert: An Interview With Dr. Ken Peters – If you live in an area with no IC specialists, you'll want to take a close look at this interview. Dr. Peters runs one of the best IC clinics in the world and his approach also assesses the whole patient. He's a master at diagnosis and has an excellent response rate.
(4) Inside AUA 2015: The Latest Research – The American Urological Association meeting presented some very interesting new research on IC as well as a fabulous "second opinion lecture" that presented two excellent case studies of men with chronic prostatitis who had been incorrectly treated with antibiotics for years.
(5) Drugs In The Pipeline: New Treatments Currently In Development – We review five new therapies are currently progressing through clinical trials with solid success at reducing bladder and/or pelvic pain symptoms.
(6) Feature Story: Fibromyalgia – IC writer Stacey Shannon shares several stories of patients struggling with fibromyalgia, a common related condition to IC. If you struggle with unusual pain that seems to move throughout your body, you are not alone!
(7) Bladder Pain Relief Made Easy: Suprapubic Trigger Point Therapy – Isa Herrera PT shares simple steps that you can use to help reduce painful trigger points in the lower abdomen and pubic area. if you find yourself pressing into your lower belly when you're having an IC flare, this could be a trigger point!
(8) Consumer Alert: Why You Shouldn't Load up on NSAID's For IC – It's so tempting to reach for an OTC pain killer when IC strikes in the middle of the night but they have been associated with some new, serious risks especially for patients with a pre-existing heart problem. They can also cause a serious reaction shortly after taking them.
(9) The IC Diet Project: Zucchini: How Do I Love You – Julie Beyer continues the IC Diet Project blog series with a fabulous article on the oh so friendly veggie, zucchini!! Muffin lovers rejoice! She offers ten ways that you can enjoy zucchini as well as two fabulous recipes!
(10) Patient Story: Atara Schimmel's Stunning Angel Project – Atara's story could be heartbreaking but it's not because she's finally found doctors who actually believe her and, after years of pain, have helped her unusual case of pelvic and genital pain. She's using her art to create awareness and just won an fabulous contest for the City of Boston. She's a true inspiration!
Publisher: Interstitial Cystitis Network
Contributing Writers: Jill Osborne, Julie Beyer RD, Isa Herrera MSPT, Stacey Shannon