Interstitial Cystitis (IC) Support Group
Interstitial Cystitis (IC) is a urinary bladder disease of unknown cause characterised by pelvic and intense bladder pain, urinary frequency (as often as every 10 minutes), and pain with urination. It is not unusual for patients to experience nocturia and pain with sexual intercourse. IC is also known as painful bladder syndrome (PBS), particularly outside of the USA.
Hello all,
I was diagnosed with IC nine years ago, but struggled for 4 years before receiving my diagnosis; and as many of you know, this delay is far too common among our community. I am very passionate about informing the world about IC and I pass out flyers and ribbons every September in an attempt to get word out and raise money for research. This year, with the help of a remarkably wonderful friend, we are going to take my previous awareness efforts to a whole new level. We be contacting news/radio stations, local magazines, and will hopefully put together an event or a walk in my Fort Worth, TX neighborhood.
I am reaching out to you because I have never arranged anything of this sort and I would appreciate any words of advice, recommendations, ideas, insight, and/or help in making this possible.
I have a wonderful support system who are willing and ready to help me bring this event to fruition, but I am definitely in need of guidance.
Thank you in advance for your feedback and support!!
Krystle
I was diagnosed with IC nine years ago, but struggled for 4 years before receiving my diagnosis; and as many of you know, this delay is far too common among our community. I am very passionate about informing the world about IC and I pass out flyers and ribbons every September in an attempt to get word out and raise money for research. This year, with the help of a remarkably wonderful friend, we are going to take my previous awareness efforts to a whole new level. We be contacting news/radio stations, local magazines, and will hopefully put together an event or a walk in my Fort Worth, TX neighborhood.
I am reaching out to you because I have never arranged anything of this sort and I would appreciate any words of advice, recommendations, ideas, insight, and/or help in making this possible.
I have a wonderful support system who are willing and ready to help me bring this event to fruition, but I am definitely in need of guidance.
Thank you in advance for your feedback and support!!
Krystle
I would love it if you could research and pass along suggestions or ideas!
I'd also be grateful to be led to different avenues of outreach. I have sent an email to the IC Network; If you or anyone else know of another community I could access to spread the word, I'd have a better chance at raising money and awareness. Please ask your families and friends what their perspective is because they are struggling with our illness as well. Ask them what they'd like to see or need during IC awareness month. For many of us, our able ones are our advocates. I want to do something that will benefit us, as well as our loved ones. Please reach out; please flood me with ideas.
If anything, summarize your stories and allow me to use them as I compile a strong message of awareness for physicians.
I just saw you post and joined this group. I know it is late but if you need help I will do what I can. I was diagnosed this year with IC. I have suffered for years before the diagnosis and as of today I am suffering from a "flare up" for over a week. I think what you are doing is great, I pray it will give the doctor's insight and ensure a speedy diagnosis for others.
I currently attend UC Merced and I would really like to bring the awareness month to this school, as it is is heavily centered around research and I think people would be willing to help. I am newly diagnosed and am trying to learn the ropes of the disease currently, but I know there needs to be more research!!!! Is there any way I can assist you in your efforts to fundraise at UC Merced. I have already posted about the disease and research/ fundraising on a Facebook page that reaches out to teachers, staff, and students at UC Merced. I would really like to help!!