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+.