I think that the ICA has help to bring awarness and education not only to the Drs and caregivers, but the the people who are living with this chronic conditon. It will change your life. I thank the ICA for there efforts and support to people with IC. thanks
When I was told I had IC in 1990 there was very little information available for doctors or patients. I was fortunate that I had one of the best doctors in the nation who directed me to a support group that had materials from the ICA. Soon after that my sister encouraged me to get a computer and "on the net" (this was the olden days!) and join online chat groups that she had found about IC. I've been using the support system of the ICA ever since. Whether it's checking on their website for new treatment protocols, checking the Facebook updates, getting my ICA email updates or directing newly diagnosed people to their website, the ICA plays a critical part in IC treatment for anyone who is going through the journey of learning to live with IC and the many autoimmune issues they will also have to deal with. The ICA freely shares information, support and guidance to members and non-members, patients, family and doctors; and has been building their website resources as well as trying to keep support groups going in real locations as well as on the internet. The ICA has given great support to my doctor, Dr. Robert Evans, who is dedicated to IC research and finding a way to relieve the pain that limits our lives each day. They have given him a platform to share his knowledge and a place to share his ideas with other researchers. I'm sure their support has allowed him to get some of the funding and attention he needs to continue the research he is doing. I know that research will eventually help me on a personal level, because he SEES me and he KNOWS me and how IC AFFECTS me, and he's working hard to find something to HELP me and others, and the ICA HELPS HIM HELP ME.
The ICA website is a wealth of information. For t those newly diagnosed, it is absolutely essential they learn as much as they can from ICA. I've been diagnosed for over 4 years now and the only people I've run into that have heard about IC are urologists and ob/gyns. I wish ICA could produce a commercial on TV to promote awareness. This is such a painful disease and we deserve more attention and research done on finding a cure.
I found this website by doing an online search when I was diagnosed last Summer. They had the most up to date information on everything for diet to meds to keeping journals to finding Helathcare providers. My Urologist, who is great, was not a memeber and did not have materials. I reccomended the website to both him and another Health Professional and they thought it was great. I have ordered several books, and they have helped me figure out my diet restrictions. I owe a ton of thanks to ICA for helping me figure out where to go and to have some hope for the future.
When I was diagnosed with IC I had never heard of the condition. When finding this organization on the web I felt I was not alone with my suffering. The diet suggestions and other helpful information helped me get through the worst of it and even persuade my urologist to try a procedure that make my life better.