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By Tig2 ·
Recently I have had several people in a variety of geographical areas send me an email about a variant of breast cancer called Inflammatory Breast Cancer or IBC.

IBC is the rarest form of breast cancer, accounting for 1%-3% of all breast cancers. The email was started by someone who caught a piece reported by Seattle's KOMO television.

The concern that I have is that the email really ought to be sent along with it's snopes link (http://www.snopes.com/medical/disease/ibc.asp) in order to help validate it. In an email I received this morning the tone was more from the standpoint that this diagnosis has been hidden from the public. I contend that this is not the case. I have been extremely aware of IBC for 3 years although I had a peripheral awareness of it earlier.

While awareness is a good thing, hysteria is not. If you receive this email- probably from someone who cares- please be aware of the following points. IBC is real, though rare, and no one has been hiding anything.

Anyone who knows me understands that this is a passion for me. I am very dedicated to seeing a cure in my lifetime. But I know that anger and hysteria only slow things down. And sending a message to everyone in your email book isn't always the best way to get the word out.

If you are interested in learning more about IBC and it's characteristics, please follow the links below.

October is Breast Cancer Awareness month. Wear a pink ribbon for all the women in your life.

http://www.detnews.com/apps/pbcs.dll/article?AID=/20060926/ENT01/609260404/1033

http://www.channelnewsasia.com/stories/health/view/232544/1/.html

http://cbs3.com/seenon/local_story_268213031.html

http://abclocal.go.com/ktrk/story?section=health&id=4578209


Edited to add the following:
Forwarding email to everyone you know, regardless of the validity of the information, has the effect of trivialising the information. If you MUST forward an email, please take that into consideration.

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Good info

by Maevinn In reply to Anonymous email

I also wanted to say thanks to you for bringing to the fore things that tend to be on peripheral radar.

Also, www.fordcares.com has some great clothing and accessories, and money from their purchase goes toward the fight.

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Thanks Mavyn

by Tig2 In reply to Good info

My partner's brother works for Ford. At the last Race for a Cure, they were giving away pink ribbon pins with the Ford oval on them. So of course (partner owns a Ford truck) we stay tuned in to the Warriors in Pink campaign.

Thanks for the reminder- I should list sites that support the fight. Think about it, never remember to actually do it. I'm glad you were ahead of me with that!

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Tig2, I know that's your cause, but. . . . . . . .

by maxwell edison In reply to Anonymous email

...such emails should never be forwarded. Never, never, never, never, never. And when people send them to me, I always send them a personal reply and kindly ask them to never do it again. (I explain why.)

It doesn't matter if it's a real cause like this one or a bogus chain-letter type. They should never be mass mailed and/or mass forwarded. (Did I say never?)

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Max, I absolutely agree with you

by Tig2 In reply to Tig2, I know that's your ...

Unfortunately, the alarmist nature of this one causes the exact opposite reaction than was (I hope) intended by the original author. Especially as the new variants have allegations of wrong-doing in addition to the original message.

I received both the original message along with variations from easily 30 or 40 sources yesterday. I expect that I will have a similar experience today.

If anyone receives this email, I would hope that they would hit the delete key or find a different way to pass along the information. If someone MUST pass it along, they need to consider adding the Snopes link for validation.

But frankly, given the tone I was seeing yesterday, I would really rather that the message NOT be passed at all. The email does not contain enough real information to be valid and the accusations it contains are outrageous.

Mass emailing/mass forwarding this information could easily cause people to completely discount the very real information regarding IBC. That would be completely counter-productive.

I was trying in my initial post to tell people to NOT forward this email. Or to at least alter it to include a validation link. The reality of IBC (because of its nature) does need its own awareness- email is the WRONG vehicle.

My apologies if that is not what I communicated. Hopefully, via this post, I have clarified my position. Awareness is good. Email awareness is counter-productive.

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Excellent Job on passing the IBC info along

by ImTrubl In reply to Anonymous email

I also did a mass emailing and got back 25 responses that hadn't heard of IBC. Needs to be posted upon every site and You're right. The SNOPES link should be sent with it.

Too many idiots passing too much crap that has to be checked first.

I have to add that when I sent the post, that I included the original Television link to be watched and found it difficult to believe that only one station had carried a live showing.

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Email and IBC

by Tig2 In reply to Excellent Job on passing ...

Thanks for standing up for awareness. I apologise, I have been out of town but want to bring this to your attention.

First- I'm a survivor. I say NONE of this for lack of caring.

Second- KOMO wasn't the first or the only. IBC has been around for a long time. KOMO tried very hard to make it a scare piece. It isn't and shouldn't be.

IBC is too serious an issue to leave to email. And the email I see is too often fraught with hysteria that doesn't belong.

The message is, and should always be awareness. We should be aware. We should pass information responsibly. We should not be alarmist.

KOMO got a few things wrong. The Komen will be happy to direct you to responsible sources that know and understand IBC. IBCresearch.org will be happy to direct you.

As it is Breast Cancer Awareness Month, this IBC email will make the rounds... again. And it will do so without the correct information. Please contact your local Komen group or www.ibcresearch.org for additional information about how to protect yourself.

In the next 12 months, 175,000 women and men will be diagnosed with breast cancer. In the next 12 months, 40,000 will die. Only 1%-3% will be from IBC. Know the signs and symptoms! You can find responsible information on www.ibcresearch.org,

Please communicate responsibly on this issue. Bulk emailing defeats the purpose.

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