A Welcome Message From Our Founder
Jill Osborne, M.A.
(Santa Rosa, CA) Welcome to the Interstitial Cystitis Network, a publishing company dedicated to interstitial cystitis and other pelvic pain disorders. We strive to present the best research, information, and support directly into the homes and offices of our users (patients, providers & IC researchers). The ICN currently serves more than 200,000 patients a month in our free education and support services.
A Brief History
The ICN began as an offshoot of IC-Redwood Empire, one the largest IC support groups in the country. As a support group leader, I wanted to find a way to bring support to the patients who were too ill to attend our meetings. That brought me to America Online (1994) where I ran the first bladder disease message board & live support chats. That experience proved that support via the web can be practical and helpful. Our most popular hours were the evenings, when patients were often struggling with flares. Not surprisingly, men with IC and others who are reluctant to attend local support group meetings, were very active online. The anonymous nature of the web gives patients the chance to talk fully about their symptoms (i.e. such as the impact of IC on relationships or sexuality) and concerns, without embarassment.
In early 1995, we launched the IC Network, the first web site dedicated to interstitial cystitis. Our fundamental goal was high quality, free information for patients. Our first task was the creation of the "ICN Patient Handbook." Over time, and as more patients and physicians became involved, our web site has grown dramatically with many new resources and services (see below). Happily, our work has been recognized as one of the outstanding health sites on the web.
In 1999, we began our operations as a mail order & publishing company. There are so many resources that IC and other bladder patients can find helpful yet, unless they visited a support group, they may not know of them. We created the ICN Mail Order Division to offer resources that many patients have found helpful, such as the best IC books, bladder friendly chair cushions, heating pads, low acid coffees, low acid teas, travel johns, supplements and much more! In 2004, we launched another new service, our new four color newsletter for our ICN Subscribers called "The IC Optimist" that focuses entirely on patient education, care and support.
Our motto is "There is nothing so moving, not even acts of love or hate, as the discovery that one is not alone." Truly, IC patients no longer have to suffer in silence at home alone. We have new treatments, new promising research and most of all, the support of thousands of IC patients who can offer their encouragement, their practical tips and their hope!
Navigating Our Site
The best way to navigate our site is from the the front page (http://www.ic-network.com). If you'd like to stay informed and be notified of our guest lecture and chat schedules, sign up for our free ICN E-Newsletter.
Most patients begin in the What is IC/PBS section, which explains the basics of IC. They then cruise across to treatments, self-help, managing IC flares, finding IC support, the IC diet and so forth. If you're a researcher at heart, you'll enjoy browsing our IC Library, where you can read the latest research abstracts and articles on-line. And, if you're curious about what doctors think of IC around the country and/or want to hear about IC therapies and research, make sure that you read our "Meet the IC Expert" Guest Lecture series transcripts, where you can review the lectures from many of the best and brightest IC professionals in the world!
Our site thrives because of the many volunteers and patients who have contributed their time and work. Bev Laumann, author of "Taste of the Good Life: A Cookbook for An Interstitial Cystitis Diet", has written dozens of monthly columns on the topic of IC and diet which we have titled "Fresh Tastes by Bev." If you're looking for new diet ideas, that's a great place to begin, along with our own on-line IC Chef Cookbook. If you are struggling with paying for medications, we also have an extensive list of all current Drug Assistance Programs.
There's so much here, we just can't list it all. Please cruise through all the links in the right hand column for yet more info!
Consumer Awareness
We take our responsibility to provide reliable information very seriously and was the first IC website to apply for and receive certification with the HonCode: Health Code of Conduct For Medical Web Sites (ID# 269714). This is one reason why the ICN has received several Medical & Web Site Awards and was named one of the top five health web sites on-line in 1999 by the GII Awards, in the select company of the Mayo Clinic and AEGIS (The AIDS International Database Project). We are also four star mental health net web site.
Community Outreach & Partnerships
As you use the ICN, we hope that you will share the information on our site with your physicians, families, friends and support group members. There are still millions of others with IC who are being told that there is no hope. They have no idea that there are new treatments or even basic diet information. There are physicians (especially primary care providers, family medicine & emergency room staff) who are unaware that IC is a legitimate disease. We must educate as many people as we can.
I encourage you to be an active participant in your medical care. Create a partnership with your doctor as you both seek to understand and find a treatment for your IC. Join the on-line support groups and activities so that you can gain support and then offer support to someone else in need. And, if you find our site helpful, please consider supporting our work by purchasing an ICN Subscription.
I wish you well! Be wise! Be strong and always keep the faith!
- Jill :)
Read more about Jill and her diagnosis of IC here!
Jill Osborne, IC Network Founder
Support Group Leader since 1993.
E-mail: jill@ic-network.com
