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.