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Hereditary EC

dlrepic
Posts: 64
Joined: Nov 2010

I hope this post finds everyone having the best they can under the circumstances.  I haven't posted in 9 months.  My dad lost his battle June 15, 2012.  My grandfather lost his in November 1984.  In the last month, both my dad's brothers have been diagnosed with EC.  Staging for the younger was yesterday - Stage IV.  I haven't had contact with the older brother, but I'm sure it's not an early diagnosis.

I have been told nurmerous times that EC is not hereditary, well I think that this should dispose those myths.  I encourage anyone with a family member with EC that has not been checked to please get screened.  My brother has Barrett's, so I know what's down the road for him.

I was hoping to talk with William because he personally reached out and called my dad prior to his surgery.  I really needed some advice to share with my family and was horrified to learn that he had been removed.  Took quite a long time going back through past posts to finally find an explanation.  My dad had his faith, however I am agnostic and nothing William ever said offended us.

I hope that they will find better, more successful treatments in our lifetime.

Take care

Danielle

 

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