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Dec 31, 2016 · Coping with a Rare Disorder: Cronkhite-Canada Syndrome

I am sorry but I did not receive your reply. You can contact me at rnparkin@hotmail.com I would love to hear from you.

Oct 23, 2016 · Coping with a Rare Disorder: Cronkhite-Canada Syndrome

Like Mr. Hershey I was diagnosed with Cronkhite Canada Syndrome in July of this year. I am 59 years old and up until November of last year was very active and lead a very active lifestyle. I lost my ability to taste food in November of 2015 and along with that my appetite for food. Very quickly I started to loose weight. In November I weighed 240 lbs currently I weight 170 lbs. After persuading my doctor to send me for a colonoscopy, they found three very suspicious polyps, that thankfully were non cancerous, however more were found and a second colonoscopy was scheduled two weeks after thei first one to remove several others. All came back non malignant. Like Mr Hershey I lost all of my hair along with my finger and toe nails.
The surgeon scheduled me for genetic testing as a result at the Ontario London Health Sciences Center. It was discovered after consultation with the Genetisis, and two Gastrologists that I had CCS.
I am now on a low carb high fat diet. I have not gained any weight and continue to slowly loose weight.
I would be very grateful for any advise that can be shared which may help further treatments that I can share with my doctors in London. I have very little energy and still have not regained an appetite and virtually force myself to eat and consume enough calories on this diet to maintain my weight.
I am trying to remain positive throughout this process and will be meeting with my doctors on November 4th to discuss further strategies in my battle to regain my health again.
Thanks for any advise anyone has to offer that can be shared with my physicians.

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