I really wanted today to be a lazy Sunday

But I need to write about something before it festers inside me for too long and sucks the joy out of this weekend.  I spent the weekend with my nephews.  They had a sleepover here and we made Mummy Apples (although I think we were missing one ingredient and they’re not going to be as “mummy-ish” as they’d like) and watched “Scared Shrekless”.

Great, great, great, wonderful weekend.

So why is this next thing bothering me so?  I’m not sure.  Why should it affect me?  I don’t know.

Cowden’s Syndrome puts me high-risk for breast cancer but I’m not BRCA+.  Now if you’re BRCA+ you get much more attention/notariety but if you have CS, no one’s heard of you.  I received an email from a contact that someone was looking for people who are BRCA+ (NOTE:  I read that to be HIGH-RISK for breast cancer.  People don’t know that you can be high risk for breast cancer with other genetic conditions) to participate in an activity.

I’m not BRCA+.

CAN YOU IMAGINE?  If I WAS able to participate in said activity?  What kind of AWARENESS AND ATTENTION that would bring to Cowden’s Syndrome?!  I feel let down. I feel frustrated.  I even feel a bit angry.  I feel short-changed.  I feel that I SHOULD have the right to participate in that activity.  Just because I’m not BRCA+ doesn’t mean I’m not high-risk for breast cancer.  My risks are just the same.

This is why I have this blog.  To raise my voice.  To shout it from the rooftops.  To not take this rare disease lying down.

Yet I’m not BRCA+.



[End rant….]


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