I had the privilege of taking over IC Awareness activities four years ago after the campaign had been abandoned by a pharmaceutical company. While in the hands of big business, it was used to promote medications for IC. I had another vision. I wanted IC Awareness Month to empower patients to take action, real action, to improve the care of patients in their own communities, towns and states. IC Awareness Month isn’t about a national organization, like the ICN or ICA. It is ENTIRELY about giving patients the opportunity to kick some “@#$@#” especially if they’ve been mistreated.
If, for example, the schools in your community refuse restroom access to students in need, you can use IC Awareness Month to give them some educational materials that will educate them and insure that future students will be treated with compassion.
If you’e encountered doctors and medical care providers who know little about IC, you are not alone. The majority of clinicians received very little training about IC and pelvic pain in school and most were given no training about the influence of the pelvic floor muscles in bladder and pelvic pain. You can use IC Awareness Month to give them the latest information about IC, such as the AUA Treatment Guidelines.
If you struggle with IC so severe that you feel powerless, I’m here to say that you CAN do important things even if you’re lying in bed. You can write an email to your congressman asking that they fund IC research. You can tell your story to your local paper to educate others about the struggles you’ve faced and may face in the future. You can participate in support groups and for the bold, why not start a support group! That’s what I did! I started my first support group, IC Redwood Empire, when my pain was so intense that I could barely sleep or function. The IC Network was born one year later and is currently rated the top website in research studies conducted by Harvard Medical School (2011) and the University of London (2013). Best of all, by helping others I truly was able to help myself too.
I hope that you’ll join the cause. We want patients to make posters! We want patients to speak out! We want to recognize the best doctors and physical therapists who are treating IC! To do this, we do need you!
Welcome to the cause!
Jill H. Osborne, President & Founder
Interstitial Cystitis Network