Terry Lynn Arnold, founder of The IBC Network Foundation who was diagnosed with triple-negative inflammatory breast cancer in 2007, talks about how her organization is raising awareness of and funding research on this rare type of breast cancer.
Running time: 1:48
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Terry Arnold: Hi, I'm Terry Arnold, I'm the founder of the IBC Network Foundation. And what we are is a 501(c)(3), and our focus is to fund research for a rare form of breast cancer called inflammatory. Inflammatory's been around for a couple hundred years, but it's sort of viewed as an orphan disease due to its rareness and also the inability to find early detection. A mammogram won't find it, an MRI is viewed as the standard that we need to get that, which is not normally the thing you have to do with breast cancer. Biopsies can even miss it, because it's webby and diffused like cotton candy; one of the same reasons that the mammogram will miss it. It tends to hit women in their early 30s, sometimes even into their 20s, which we don't think of as breast cancer, again. So you can see these things all kind of bring a perfect storm of rareness into play.
Inflammatory presents with skin changes. It looks like a rash, or maybe a pimple, or a little bug bite that didn't heal, or maybe a sudden swelling in one breast. So why we're here today is to give information to doctors and support them by letting them know there are specialty clinics in the U.S. that do fund and research inflammatory, so they can kind of build that network. I know we all can't know everything about every rare disease, so to show them kind of who are the thought leaders on that and how we can gain support.
We focus on funding research, but we also do a lot of things to help doctors have well-education patients. We have an app available for free; you can search for it on iTunes or Google Play and look up IBC Network, and it's a free download. And it walks you through the process. We had to actually collect every little bit of information here, there, and yon to put it into one place, because IBC is not commonly taught or talked about.
I've presented at conferences like this, so that's why we're here today. We hope people will learn more about it, and they can check us out by looking at TheIBCNetwork.org online or follow us on Twitter at @TalkIBC or even on Facebook.