The objective of this web site is to provide information about Cronkhite-Canada Syndrome (CCS) based on my experience as someone that has CCS. There is limited information available regarding Cronkhite Canada Syndrome as it occur’s so rarely. I am not aware of any research that is being performed to better understand CCS. I found a single instance several years ago where a doctor at the University of Texas may have been doing some basic search, using finger nail clippings, but it appears he lost his funding and the research was stopped. Most of the information available on-line is a summary of literature for no primary research is being performed. Thus the value of the information to someone that has or believes they have CCS is limited. If you have CCS, the available literature may cause you concern when you read of a 50% survival rate.
I have lived with Cronkhite Canada Syndrome for almost 10 years and to a large extent symptom free. I am not trying to provide medical information or suggestions. I am trying to share my experience – for example, how my diagnosis was made, the treatments I continue to take and the results to date. Lastly, feel free to contact me via this web site. I would be more than happy to talk with anyone who has CCS for we belong to a small club.