Poignant. Below are samples of the types of letters we received

Poignant. Below are samples of the types of letters we received: “I am a nurse and I have interstitial cystitis. It took over 15 doctors and over 2 1/2 years to even get a diagnosis. I read the article inthe paper (about the ICA) and felt the need to respond right away. Needless to say 14 doctors didn’t believe me and recommended psychiatric care. I knew something was wrong and persisted. I haven’t been able to work for 2 years. I am told I have to learn to live in pain without medication. I wish it were possible to put some doctors in my body so they could feel what it is like to have this pain. I have constant, intense unrelenting, deep pain, and hard as I try mentally, physically and emotionally, I cannot stand it for long without relief. I feel like I’m being tortured without respite. It makes your life an endurance contest.” “As you know, 6 years is a long time to put up with this terrible condition. I am almost at the end of my rope. Thoughts of suicide intrude in my mind very frequently….I do not want to sound like a whiner but I think you will understand. IC has taken practically all the good things out of my life….This condition has caused all kinds of trouble between me and my wife. I am kind of useless now. Anyhow, thanks for your info and kindness…. Just think how astronomical the odds of a man getting IC are.” Two years later, in 1987, the following letter was syndicated nationwide. “Dear Ann Landers: After 3 years of non-stop pain, 40-60 bathroom trips a day, little sleep, lots of tests, 12 doctors, hundreds of allergy shots, diets, antibiotics, and six unnecessary operations, I have finally been diagnosed as having interstitial cystitis, a `rare’ 4-Hydroxytamoxifen biological activity disease that doctors seldom look for and may turn out to be not so rare…..” The typical history was urinary urgency, frequency and bladder pain over a span of many years. Patients had often seen five to ten physicians, had had complete work-ups that were negative, and had received no diagnosis. They were told that either nothing was wrong or the symptoms were “all in their head”. These IC patients were suffering from terrible pain and urinary frequency as often as every 10 minutes. They were trapped in their own home, cut off from their friends, family and society in general, due to their severe disability. On occasion, even family and friends began to believe that the symptoms were not real since the doctor had said so. It became clear that IC was not a rare disorder and that there was an urgent need to address the issue. I started the ICA in the living room of my NYC apartment in 1984. We were a small group of volunteers with an overwhelming amount of work to be done. I chose the brightest sounding women who contacted us from NYC and across the country after the Good Morning America interview, and we gradually added additional volunteers. We could not afford to hire a public relations firm,?Translational Andrology and Urology. All rights reserved.www.amepc.org/tauTransl Androl Urol 2015;4(5):491-Translational Andrology and Urology, Vol 4, No 5 Octoberso I personally pounded the pavement for many years trying to get media coverage. At first, there were many EPZ004777 chemical information rejections. `Not relevant for our audience’ was a typical response. But eventually, through networking, contacts and sheer perseverance, we were able to get coverage by Jane Brody of The New York Times, The LA Times, U.S. News and World Report, NPR (National Public Radio), CNN, The Philadelphia Inquirer, The Chicago.Poignant. Below are samples of the types of letters we received: “I am a nurse and I have interstitial cystitis. It took over 15 doctors and over 2 1/2 years to even get a diagnosis. I read the article inthe paper (about the ICA) and felt the need to respond right away. Needless to say 14 doctors didn’t believe me and recommended psychiatric care. I knew something was wrong and persisted. I haven’t been able to work for 2 years. I am told I have to learn to live in pain without medication. I wish it were possible to put some doctors in my body so they could feel what it is like to have this pain. I have constant, intense unrelenting, deep pain, and hard as I try mentally, physically and emotionally, I cannot stand it for long without relief. I feel like I’m being tortured without respite. It makes your life an endurance contest.” “As you know, 6 years is a long time to put up with this terrible condition. I am almost at the end of my rope. Thoughts of suicide intrude in my mind very frequently….I do not want to sound like a whiner but I think you will understand. IC has taken practically all the good things out of my life….This condition has caused all kinds of trouble between me and my wife. I am kind of useless now. Anyhow, thanks for your info and kindness…. Just think how astronomical the odds of a man getting IC are.” Two years later, in 1987, the following letter was syndicated nationwide. “Dear Ann Landers: After 3 years of non-stop pain, 40-60 bathroom trips a day, little sleep, lots of tests, 12 doctors, hundreds of allergy shots, diets, antibiotics, and six unnecessary operations, I have finally been diagnosed as having interstitial cystitis, a `rare’ disease that doctors seldom look for and may turn out to be not so rare…..” The typical history was urinary urgency, frequency and bladder pain over a span of many years. Patients had often seen five to ten physicians, had had complete work-ups that were negative, and had received no diagnosis. They were told that either nothing was wrong or the symptoms were “all in their head”. These IC patients were suffering from terrible pain and urinary frequency as often as every 10 minutes. They were trapped in their own home, cut off from their friends, family and society in general, due to their severe disability. On occasion, even family and friends began to believe that the symptoms were not real since the doctor had said so. It became clear that IC was not a rare disorder and that there was an urgent need to address the issue. I started the ICA in the living room of my NYC apartment in 1984. We were a small group of volunteers with an overwhelming amount of work to be done. I chose the brightest sounding women who contacted us from NYC and across the country after the Good Morning America interview, and we gradually added additional volunteers. We could not afford to hire a public relations firm,?Translational Andrology and Urology. All rights reserved.www.amepc.org/tauTransl Androl Urol 2015;4(5):491-Translational Andrology and Urology, Vol 4, No 5 Octoberso I personally pounded the pavement for many years trying to get media coverage. At first, there were many rejections. `Not relevant for our audience’ was a typical response. But eventually, through networking, contacts and sheer perseverance, we were able to get coverage by Jane Brody of The New York Times, The LA Times, U.S. News and World Report, NPR (National Public Radio), CNN, The Philadelphia Inquirer, The Chicago.