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Simone B.

268 profile views
1 reviews

Review for No Stomach For Cancer, Madison, WI, USA

Rating: 5 stars  

I have been diagnosed with the CDH1 gene which increases my chances of having stomach cancer to about 80%. My father and uncle have both passed away from Stomach cancer and my other uncle and aunt have both had their stomachs removed as a result of cancer. Due to the poor detection of stomach cancer through endoscopy, it is advised that those with the CDH1 gene have a total gastrectomy (removal of the stomach) which eliminates all risk. Based on our strong family history, I have elected to have the surgery. During my research of this gene I came across the NSFC website and have found it invaluable!! It gives factual information as well as personal experiences from others who have had TG and the opportunity to take part in discussion forums. I access this website on a weekly basis and will continue to do. It is very comforting to find such a site when diagnosed with this quite rare but deadly gene and to hear the experiences and receive the support from other members

I've personally experienced the results of this organization in...

enabling me to find out alot of vital information relating to my condition and therfore helping me make an informed decision to embark on my life changing surgery. Reading the personal stories and join into discussion groups has really given me comfort and made me feel as though I am not alone through this. The founder of this site, Karen, has also corresponded with me on several occasions about her experience and knowledge which has been amazing.

If I had to make changes to this organization, I would...

I cant think of any changes I would make - I think it is a wonderful organisation. I guess the only thing that would help is to be able to assist the site with more public awareness of this fantastic organisation and education around stomach cancer.

Role:  General Member of the Public & I have CDH1 gene and have used the website for further information.