Technology problems

I read all over the Internet that Cowden’s Syndrome is rare disease.  1/200,000 persons affected.  Rare.  Rare.  You don’t see it that often, blah blah.  Sometimes hearing this makes me very angry.  Today?  I am thankful for the Internet and Social Media because I have connected with several people who have Cowden’s Syndrome!  When I think of that I am humbled.  Connecting with people from all over the world who are “rare”.  But you know what?  I am not RARE.  I am me!  Heather.  A single girl trying to navigate life.  I don’t like the label sometimes.  I want to fight against the label.  That is part of the reason I write.

Anyway, I am sharing this post from another Cowden’s Syndrome warrior; she’s had colon cancer.  CS affects different people in so many ways (I have Lhermitte-duclos Disease.  Not all people do.  Some people get breast cancer, or uterine cancer, etc. You get the idea, right?) I want people to know that this rare disease isn’t really that rare.  We are out here.  DOCTORS need to be aware, too.  (I am thankful Dr. K knew about LDD.)

Here is “whatsupcowdens” blog post.  Please check it out.

Technology problems.

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One thought on “Technology problems

  1. I am so glad that I asked you a question one day from the support group website. After reading this blog…I don’t feel like I am the only one with this disease. I wish there was more doctors out there in the world that knew about cowden’s disease.

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