any one with IBC Inflammatory breast cancer

tlarnold

I am looking for African American's with IBC.  I am not Africian American, but I am trying to connect with women of color to be sure they re represented. I am doing a map for awareness, and I only have two ibcers of color on this map.  That's can't be anywhere near who is dx with ibc.  www.terrysmap.org

OtraVez

I've been dignoseed with IBC. 

tlarnold

Do you mind telling me about you?  I see you were dx in 2006!  That is great to see you here and well. I have been working to educate about IBC and I read that IBC is higher in African American and Jews, but I have not be able to find but the fewest of African Americans.  Do you know others with IBC?  Have you seen my map?  I will list some sites I have been using on facebook as it has been wonderful for connecting with others. 

https://www.facebook.com/?page=1&sk=messages&tid=2253066248220#!/pages/The-IBC-Network-Inflammatory-Breast-Cancer-Network/144850145588330 

https://www.facebook.com/?page=1&sk=messages&tid=2253066248220#!/event.php?eid=147402326727

 https://www.facebook.com/?page=1&sk=messages&tid=2253066248220#!/event.php?eid=157239470971564

OtraVez

I'll check out your FB pages.  Your post reminded me that I'd forgotten to update my profile - I was diagnosed with a recurrance almost exactly 5 years to the day of my initial diagnosis. 

Most folks I've "met" with IBC are actually online folks; most of my face-to-face IBC'ers have been at conferences, in the IBC session - where we all say "we've never met anyone else like us!"

Don't know about your project, but I suspect that the problem with finding black folks is a function of where your'e looking  - I ended up involved with Komen during my first treatment becaue they were having trouble finding Black women in treatment for ads, which was fascinating since all the women at my infusion center, in my support group, and in my doctors' practices were all Black (and DC is a majority Black city, so the statistics didn't really support their findings). . . . 

 Not sure how much I will respond to your FB stuff (though I will check it out), since I haven't taken put my current cancer treatment  out there (weird way to get re-acquainted with old friends from high school and college - what's up?  Oh nothing much, I'm in chemo, what about you? )

 Anyway, thanks for looking - I responded to someone else on a thread who wasn't quite so open minded or practical in their efforts to contact Black women with this disease .   .  . I'd be happy to help however I can.