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IC Awareness Month Kicks Off – It’s time to tell our IC stories and speak our truth!

September is the most important month for the IC movement. This is the time that we gather together, share our stories, educate our communities, seek out patients who are suffering in silence and work, as a group, to raise awareness about IC/BPS, one of the most and misunderstood medical conditions. Each and every day, IC patients struggle to find care. They are told that IC is all in their heads. They plea for pain relief. They struggle to find support and the encouragement that they not only need but deserve. IC Awareness Month is our time to speak our truth, to advocate, to empower and to embrace each other with kindness, respect and hope.

This year, we continue our campaign demanding compassionate pain care with a twist. Respect. As more and more patients are referred to pain clinics, they are encountering physicians who know little if anything about IC. More than a few patients are getting the “It’s all in your head” rhetoric spiced up with comments that the bladder simply can’t hurt that much. Some are struggling with pain levels as severe as cancer yet are sent home with no pain care.

This is the time. This is the place. Patients are suffering. Lives are at stake. We must speak out. This is the moment when we fight back. Below you’ll find 12 ways that you can participate this year. And I must ask, “If not you, then who?” There is no big pharmaceutical company sponsoring IC outreach. They walked away years ago. We are on our own. This grassroots campaign is built around you, the individual IC patient, taking just a few moments this month to do at least one thing that can help! Please join me!

Learn more on our campaign website – http://www.icawareness.org

12 Ways You Can Participate

1. Share Your IC Story

We are collecting stories of patients who have been denied pain care or removed from their pain care so that we can demonstrate just how IC patients are being effected. We will NOT use your names. Please tell us how you are being treated as you seek treatment for your IC and/or pain. Share YOUR IC story here!

2. Seeking Nominations for 2018 Dr, Nurse & Physical Therapist of the Year Awards

Every year, we honor those physicians and physical therapists who treat IC patients with compassion, respect and knowledge. This year we are also seeking nominations for outstanding nurses who are often the first contact for patients struggling with flares. If they are kind and compassionate, it can make a profound difference in the life of an IC patient who, at that moment, might be frightened and/or in pain. We also use this information to update our physician database so that we can share the best medical care providers with patients looking for care! Please nominate your favorite doctor & physical therapists for our annual award!

3. Share our Daily Facts on Your Social Networking Streams

We’ve assembled a fabulous collection of daily facts on IC that will help educate others about our condition. Please share these across your social networking channels! View The Daily IC Facts

4. Please Add IC Awareness Banners To Your Social Networking Channels!

Help us spread the word about IC! We have a variety of images that you can share! Add IC Awareness Month To Your Facebook, Twitter, Pinterest, Instagram, etc.

 

5. Print Out A Poster & Share It With Your Doctors

The official poster for 2018 was the winning poster in last years poster contest. It captures our intentions personally. Our lives matter. We will no longer suffer in silence! You can print out this and other posters and share it at your doctors office, clinics, community bulletin boards & more! Download IC Awareness Posters Here!

2017 Winner – E Dryburgh

6. Share Our IC Fact Sheets

A lot has changed with IC in the past five years and the odds are that your doctor hasn’t taken a class in years. Does he or she know about the new subtyping systems? You can download our beautiful full color fact sheets! Please share them with family members, friends, doctors and anyone who has an interest in your medical condition. Download the IC Fact Sheets

7. Get An Article on IC In Your Local or Regional Newspaper!

There are thousands of patients who are suffering in silence, right now, throughout the world. They don’t have a name for their medical condition. They think that pain and urinary symptoms are normal as you get older. Some have sustained muscle injuries which can be healed with pelvic floor physical therapy. Please help us reach those patients in need by sending out press release to your local paper and blogs! We couldn’t have made it more easy. You can just print it out and send it but it’s better if you also tell them a little about your IC and pain too! They want to tell the stories of local patients! View Our Press Release To Your Local Paper 

8. Participate In our Poster Contest!

This is our favorite patient contest each year and the winners are used in future IC Awareness Month campaigns. Even better, the prizes are awesome with winners receiving a Kindle or iPAD, as well as some cash prizes. We welcome all types of art… pencil, crayon, oils, watercolor from you, your children or even your pets! Remember, art is wonderfully therapeutic so if you have an hour to spare, please have some fun and play! How does IC influence your life? How are you feeling? Are you a fighter? Just go for it! Participate in Our Poster Contest

2017 Second Place – L Dryburgh

9. Participate in our Meme Contest

Memes are a great way to spread the word about IC and get a little frustration out at the same time. They can be funny, angry, snarky, poignant. Each one tells a quick story about life with IC! Memes are the best way to share IC across your social networking channels and they are incredibly easy to make. Winners will receive a Kindle, iPAD or cash prizes. Learn How To Make A Meme!

 

2017 Winner – J. Gosewehr

10. Twitter Contest – #myicpain or #lifewithic

We’re using Twitter to share the story of IC and of our struggles to obtain pain care. When something happens, good or bad, funny or infuriating, we hope you’ll tweet it using the hashtag #myicpain or #lifewithic.

Samples:

  • Why’d I drink that coffee? My bladder is on fire! #myicpain
  • Can Elmiron get anymore expensive? Wait. Don’t jinx it. #myicpain
  • Another doctor who doesn’t believe that IC is painful. #myicpain #lifewithic

(Just have fun with it but also share the real story of life with IC)

11. Donate an IC Book To Your Local Library

It’s very important that we get CURRENT and UP TO DATE information about IC in our local libraries. We hope that you will consider buying a book on IC and donating it! This year we’re recommending The Interstitial Cystitis Solution, the best book on IC on the market today. It’s the first book to clearly discuss the connection with the bladder and pelvic floor muscles. Learn more here!

12. Make A Donation

This year, we encourage donations to the IC research efforts at Beaumont Hospital! Learn more!

IC Awareness Items

Show your pride and help raise awareness for IC with our car magnets and bracelets!

IC Awareness Silicon Bracelets – Just $1.99 each

 

 

New Bracelets say “IC Awareness” and “www.icawareness.org”

Single Bracelet

Ten Pack

 

IC Awareness Car Magnets

Buy Now

 

By |2018-08-31T20:28:42+00:00August 31st, 2018|Front Page Feed, Interstitial Cystitis Network Blog|Comments Off on IC Awareness Month Kicks Off – It’s time to tell our IC stories and speak our truth!

About the Author:

My Google Profile+ Jill Heidi Osborne is the president and founder of the Interstitial Cystitis Network, a health education company dedicated to interstitial cystitis, bladder pain syndrome and other pelvic pain disorders. As the editor and lead author of the ICN and the IC Optimist magazine, Jill is proud of the academic recognition that her website has achieved. The University of London rated the ICN as the top IC website for accuracy, credibility, readability and quality. (Int Urogynecol J - April 2013). Harvard Medical School rated both Medscape and the ICN as the top two websites dedicated to IC. (Urology - Sept 11). Jill currently serves on the Congressionally Directed Medical Research Panel (US Army) where she collaborates with researchers to evaluate new IC research studies for possible funding. Jill has conducted and/or collaborates on a variety of IC research studies on new therapeutics, pain care, sexuality, the use of medical marijuana, menopause and the cost of treatments, shining a light on issues that influence patient quality of life. An IC support group leader and national spokesperson for the past 20 years, she has represented the IC community on radio, TV shows, at medical conferences. She has written hundreds of articles on IC and its related conditions. With a Bachelors Degree in Pharmacology and a Masters in Psychology, Jill was named Presidential Management Intern (aka Fellowship) while in graduate school. (She was unable to earn her PhD due to the onset of her IC.) She spends the majority of her time providing WELLNESS COACHING for patients in need and developing new, internet based educational and support tools for IC patients, including the “Living with IC” video series currently on YouTube and the ICN Food List smartphone app! Jill was diagnosed with IC at the age of 32 but first showed symptoms at the age of 12.