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ICN E-Newsletter – October 2015

Sponsored by: Imprimis PharmaBeaumont UrologySwati Spentose CystaQ – Desert Harvest AloeMultiRight Low Acid MultivitaminPainShieldMD

#1 – 2015 Awareness Month Recap & Winners

September is ALWAYS the busiest month here at the ICN because we also manage the international IC Awareness Month campaign. Every day, new facts and/or articles were released to educate others about life with IC. Our press release was distributed to hundreds of news outlets. Several international organizations joined in the cause!

Patients, medical care providers and pharmaceutical companies embraced the campaign with tweets (#icawarenessmonth), social networking postings and more than 100 entries for our art contests. The contest which created the biggest buzz was for Doctor and Physical Therapist of the Year. We’re still going through hundreds of entries to select the winners which we’ll announce later this fall.

Another highlight was the 30 day challenge issued by the Defeat IC campaign. Patients were given something new to do each day to spread the word and many participated! Those who completed all of them received a gift from the company. Thank you Imprimis Pharmaceuticals for believing in the IC patient community and participating in this years campaign.

Thanks to our amazing team of volunteers led by Christy Keyes and Michelle Crandall for compiling our poster and meme entries. To Jill Van Royen for tirelessly advocating for children with IC. She has a project that we’ll be sharing later this year. To Maggie Damken & Hope Engel for contributing articles that you’ll find below. And to the 30 patients who were on our planning committee this year.

A Giant Thank You to Dr. Matt Clark and the IC Vitamin Source for sponsoring this month’s campaign and paying for the Kindle Fire’s given to our contest winners.

And now for the winners……

A. IC Awareness Meme Contest Winners

There were dozens of fabulous entries with many different themes: funny, poignant, sweet, honest, ironic and angry. They each share a unique perspective about life with IC and did a wonderful job educating others about IC and IC Awareness Month. It was hard to pick some winners because there were so many!

First Place – Bella Raine

Angry gnomes playing bladder piñata… a hysterically accurate description of an IC flare with bladder spasms! Oh we laughed with this one! She will be receiving a Kindle Fire courtesy of IC Awareness Month sponsor Dr. Matthew Clark and the IC Vitamin Source for sponsoring the prizes.

bellar-dont-you-think-if-ic-was-all-in-my-head-id-dream-up-something-slightly-less-painful-than-angry-gnomes-playing-bladder-pinata-1b7b6

Second Place – Tricia Phillips

Some days we’ve just got to keep climbing that hill until we make some progress! You can do it and your IC sisters and brothers are standing behind you!

triciaphillips-ducks

Third Place TIE – Jason Crandall

Powerful, evocative, mesmerizing, true! Love, Love, Love this entry!

jasonc

Third Place TIE – CJ Baldwin

Well, honestly, isn’t this the truth! It is the all day, all night, needing to pee so you can never rest disease!

kathryn-alldayallnight

 

SEE ALL THE 80+ THE MEME ENTRIES HERE!

B. IC Awareness Poster Contest Winners

First Place – Erin Dryburgh

This poster might look simple at first but it conveys everything we need a poster to say. It talks about symptoms. It proudly proclaims that we are more than our IC symptoms and frustrations. And, with that very clever blank name tag, it becomes a great educational tool that patients can use in our 2016 campaign. We can see patients taking selfies holding this poster up with their name filled in. We can visualize hundreds of posters being posted in doctors offices. We can even see one big poster where every IC patient in an office or support group is invited to sign it! Thank you Erin!!!

Erin will receive a Kindle Fire as her prize for this compelling poster that will work well in next years campaigns.

erin-OurSymptoms

Second Place – Peggy McKay

We love patients who create new, unique works of art. This remarkable entry is hand drawn and
the patterning in the bladder is called Zentangle (a form of art). It was meant to be visually interesting and the “heart” of all our problems 🙂

peggim-aswefighttogether

Third Place – Eva Lea

We love the message in our third place winner. Stay Strong, Stand Tall & Hope For A Cure!
The colors and design made this a strong contender for the winner!

EvaL-staystrong-400

SEE ALL THE POSTER ENTRIES!

#2 – Feature Story

Staying Well and Doing Well: 5 Tips for College Students with IC

By Maggie Damken – Being a college student is hard, and it’s even harder when you’re also an IC patient. IC, short for Interstitial Cystitis, is a chronic pain condition that affects the bladder and pelvis, and for many of us, the pain can be devastating. I developed IC as a freshman in high school, and by the time I was diagnosed late in my junior year, my health was too precarious to leave home. I spent my first two years at community college and lived at home, where I could easily adhere to the IC diet, visit my urologist, and focus on healing.

In the summer before I transferred to my four year school, I spent a lot of time worrying:

  • “What will I do if I can’t eat the food at the dining hall?”
  • “What if I have a flare up? Can health services help me?”
  • “Will my professors be understanding?”
  • “What if I’m stuck in a hall with a group bathroom?”
  • “What will my roommate(s) think?”

Going away to college is stressful enough without these added worries. To make going away easier, I’m here to not only share some of my experiences, but also tell you what you can do to take charge of your health and maintain a level of wellness while still getting the most out of your college experience.

Read her five tips here!

#3 – New Clinical Trials

(ATTN MEN! While these two studies are only seeking women, Allergan has assured me that they are working on modifying a delivery device that would make this treatment comfortable and easy for men as well. Stay tuned! We’ll let you know when it is released! )

New LiNKA Study Launched In North America Seeks Patients With Hunner’s Lesions

Do you or someone you know suffer from IC with Hunner’s Lesions? If so, you are familiar with the pain that can make it difficult to enjoy life. Allergan, Inc. is enrolling participants for a research study investigating a drug device to evaluate the safety and effectiveness of a continuous release of lidocaine inserted into the bladder compared with placebo for treating the symptoms of IC with Hunner’s Lesions in female patients. All patients will have the opportunity to receive the active study drug if they request and satisfy the criteria. Learn more and see the research centers here!

 

New LiNKA Study Launched In North America Seeks Bladder Pain Patients

Do you or someone you know suffer from IC/BPS? If so, you are familiar with the pain that can make it difficult to enjoy life. Allergan, Inc. (http://www.allergan.com/home) is enrolling participants for a research study investigating a drug device to investigate the safety and effectiveness of a of continuous release of lidocaine inserted into the bladder compared with placebo for treating the symptoms of IC/BPS in female patients. All patients will have the opportunity to receive the active study drug if they request and satisfy the criteria. Learn more and see the research centers here!

#4 – The Latest Research

#5 – Industry & Consumer Awareness News

Nail Polish Toxins Found In Urine Could Influence Bladder Health

If you love getting a manicure or pedicure, a recent announcement by the Environmental Working Group will make you rethink the brands you might be using. Researchers at Duke University tested the urine of 26 women who had recently pained their nails and found evidence of TPHP in the urine of EVERY participant and those levels rose sharply after they applied the nail polish. TPHP has been linked to hormone disruption, obesity, poor semen quality and heart defects. Children and pregnant women are particularly at risk. Learn more in this ICN Consumer Awareness blog!

UK Approves Gepan For Home Use – A Chondroitin Bladder Instillation

Gepan instill, a potential treatment for cystitis and overactive bladder, has been added to the Drug Tariff effective October 1, 2015! This means that people with chronic cystitis and overactive bladder syndrome can now easily treat themselves in the comfort and convenience of their own homes rather than having to go to hospital clinics. Learn more!

#6 – Patient Stories

Making Peace With Yourself – Rolling Out The Mat With IC/BPS

I have had interstitial cystitis (1C) since April 2010. Pelvic floor dysfunction (PFD) and most likely pudendal neuralgia followed it’s evil partner in pain not long after. Like all of my fellow IC warriors, I would like nothing more than for both to miraculously take a hike from my body forever so I can walk into Tony’s, my favorite beach bar, again and order a lemon drop martini! Fantasy aside, I have spent countless desperate hours during my first three years with IC surfing the web for answers, supplements, medical treatments, alternative treatments and success stories. With every horrific flare, I would plead for something and someone to help me out of the pain of which we cannot speak, to give me back the life before what is now known as Functional Somatic Syndrome, when I could work full time, have a normal social life, not obsessively read food labels, worry about the water bill with every flush, and most important, be spontaneously intimate with my husband …

Then, in early 2014, about six months after reading Amy Stein’s book, Heal Pelvic Pain. I had a healing breakthrough. It took discipline and optimism, but having recovered from sacroiliac joint dysfunction in 2003,1 was no stranger to the merits of physical therapy. I started getting better within a few weeks. Read her full story here!

#7 – Simply Delicious – Low Acid Eating Made Simple

Pumpkin Month Is Here – The Classic Flavor of Autumn

Bev Lauman, author of a Taste of the Good Life: A Cookbook for an IC Diet, contributes an article on the ubiquitous and classic flavor of autumn, pumpkin. Thankfully, for IC’ers, pumpkin and other winter squashs (butternut, spaghetti, acorn, etc.) are not only easy to prepare but gentle on the bladder. If you love pumpkin like we do in the ICN office, you’ll love Bev’s two fabulous recipes: Cajun Mashed Pumpkin and Pumpkin Cheesecake. Read the article

#8 – ICN Mail Order Center

Spotlight on Desert Harvest Aloe

Desert Harvest Aloe has one of the best track records in not only supporting the IC patient community but also in offering a wide variety of supplements that many find helpful at reducing their symptoms. Their expanded product line is worth a look, particularly for patients looking for bladder and skin friendly products.

Pumpkin White Hot Chocolate

If you love pumpkin like we do, you have to try Stephen’s Pumpkin Spice White Hot Chocolate Mix! It’s absolutely yummy. We’ll have more Stephen’s Vanilla and Sample Packs soon! Check it out at:

https://www.icnsales.com/stephens-gourmet-pumpkin-spice-white-hot-chocolate.html

Struggling with Constipation?? IBS?

As IC patients quickly learn, constipation, diarrhea and/or IBS attacks often trigger bladder pain and discomfort. Throw in the regrettable side effect of constipation caused by many of our IC medications (i.e. Elavil), it’s important that we use a fiber that keeps us regular without irritating the bladder or bowel. Many commercial fibers have coloring and preservatives that irritate the bladder (i.e. like Metamucil Orange flavor). Throw in the fact that IBS makes our bowel very sensitive to traditional fibers (i.e. like granola), and we’re often not sure what to use.

We need a fiber that is bladder friendly and soothing to the bowel. Luckily, Heathers Tummy Care has the perfect solution… Acacia Fiber.

#9 – How You Can Help

When you’re the largest support group in the world with over 40,000 members who participate FOR FREE, it’s vitally important that we have funds to keep our services going. Your ICN subscriptions and donations help us maintain our extensive 24/7 support forum, conduct IC Awareness Month and develop new and much needed educational resources. 100% of your gift goes directly into IC activities!!

  • We are the only national IC organization that has an educational phone line and answers patient calls every weekday, all at no charge to our members. 1-800-928-7496
  • We develop and operate the international IC Awareness Month campaign.
  • Despite very modest funding, we have been rated the TOP (most accurate, credible and reliable) patient website dedicated to IC in research studies done by Harvard Medical School (2011) and the University of London (2013).
  • We employ IC and/or pelvic pain patients because we believe that patients do have the ability to work and contribute meaningfully to this cause.
By |2017-01-31T09:53:58+00:00October 21st, 2015|ICN Newsletters, Interstitial Cystitis Network Blog|Comments Off on ICN E-Newsletter – October 2015

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.