June 14, 2008

Shower Curtains, Breast Implants, Hair Dye, Sweeteners, What Else is Out There?

“I am a research engineer that works primarily with materials. PVC is used because it is the cheapest durable plastic, and its properties can be customized with additives. Not only is PVC harmful, the additives are harmful too (if not worse). For women and mothers everywhere, pay close attention to the use of PVC in anything that touches you or your child, especially when it comes to baby’s toys and sex toys. Visit wikipedia for a very thorough discussion on this plastic.”  ~Mr. EngineerPVC toy

Mr. Engineer,  

Thank you for your comments. I thought your insightful post needed to be the focus of our next discussion.  I seemingly meet people with priviledged information all of the time. While vacationing one year, I met a researcher who had found a connection between hair dye and cancer. When their research was really starting to make strides, she said the FDA came in, collected everything, and said they’ll be taking over the study…and then she never heard anything more of it. She said that this was typical when researchers find something that could cause a lot of concern and the FDA gets wind of it. By the way, from what she said, it might be a good idea to avoid every color but brown.

Hair Dye

Another time, a doctor of mine mentioned that during his residency, he was helping with a study on artificial sweeteners and their effect on rats. He said that every one of the rats got cancer during the study, and that they were instructed to surgically remove the cancer, and then the rats were considered “cancer-free”. Nevermind that they all got cancer from the sweeteners, with the cancer removed they could pretend it never happened. ***Did you know that in breast implant studies, often times the women that remove their implants (for whatever reason) are automatically dropped from from the study altogether?  Now I’m sure the public would be curious to know WHY they removed their implants (personal choice, health problems, capsular contracture, rupture, etc.).  That’s information that would be HELPFUL to a study, I would think.

EqualSweet n LowSplenda

These are just examples of a small amount of the information I’ve been exposed to by the professionals that have been involved with research. I wish we could all know what is really going on, from the people who see it happening every day. The best tool we have in this day and age is the Internet, as free-speech can truly prevail and companies are not able to stop our messages (or at least for the most part).

Thanks again for giving us a heads up. I encourage others to do the same, as we should all help each other to be as safe and healthy as possible. You’d think the FDA was looking out for us (they can barely keep up with produce by the way), but that’s just something we tell ourselves at night to help us sleep better.

Any other things we should look out for, readers?

~Kacey

June 2, 2008

Update on Stephanie Kuleba’s Death

I wanted to do an update on Stephanie Kuleba’s death. It is highlighted at the link below -

http://www.sun-sentinel.com/services/newspaper/printedition/local/sfl-flpkuleba0530sbmay30,0,4133462.story

Her autopsy confirmed that she died from Malignant hyperthermia, a rare genetic disease that can be triggered by anesthesia. I thought this was an interesting statement - “The intense attention on Kuleba’s case brought more awareness about risks of anesthesia, though it’s generally considered safe. ” Hello!? I think the intense attention should have brought more awareness about risks of plastic surgery in general and what people should know they are really risking when they go under the knife for cosmetic reasons. I too, had the inverted nipple correction and breast symmetry corrections Stephanie was in for. Why don’t they say that by “breast symmetry” she was getting implants? Because they don’t want to cause a spark with the surgeons or FDA? I don’t know - but my implants are out now, in order to save my life and I do have the inverted nipple correction, but after going through all the hell of being sick that I went through and knowing about Stephanie’s hidden condition, I would never go back and do it again. It wasn’t worth it & I would much rather be happy with what I was born with vs. risking my life to look more “normal.”

May 20, 2008

New Federal Legislation Will Strengthen FDA Post-Market Surveillance Over Silicone Breast Implants & All Medical Devices

Filed under: Breast Implants, FDA, News, Women's Health — Tags: , , — Sybil @ 1:56 pm

I’m so pleased to tell you that we have a great champion in United States Senator Barbara Boxer of California, who late last week introduced a bill (S.3020) to bring greater accountability and transparency to the FDA’s regulation of silicone breast implants and all medical devices.

When the FDA approved the use of silicone implants in 2006, it failed to live up to its mandate of ensuring that the product was safe before allowing it to go on the market. Instead, the FDA decided to allow manufactures to conduct post-approval studies to demonstrate the safety of the implants once they were implanted. However, in a matter of a few months, the manufacturers convinced FDA to change the requirements of the studies, without any public input. And we learned that the FDA was essentially a “toothless tiger” when it came to going after medical device manufacturers who drag their feet or fail to submit data from their studies. Mary and I set out to correct these injustices by approaching Congress with our findings and Senator Boxer responded.

S.3020 prevents FDA from unilaterally and secretly waiving or altering a post-approval agreement with a manufacturer, without letting the public know. The bill also gives FDA greater authority to force manufacturers to comply with their post-marketing agreements, by increasing fines and requiring public notification that could lead to the removal of the product from the market.

Please send Senator Boxer a note of thanks for introducing this vital and necessary legislation. The medical device manufacturers are a $75 billion industry with a lot of influence in Washington, D.C., so it’s very important that Senator Boxer know we support her.

The easiest and most effective way is to visit her website and simply fill in the email form. Under the heading of “message topic” choose “Women’s issues” and under the heading of “Message Subject” type in “S.3020 FDA Accountability and Transparency Act.”

In the message box, please thank the Senator for introducing the bill. Her bill is vital to making sure FDA and the public receive all information necessary to make an informed decision about whether or not medical devices are safe. And let her know that FDA needs more enforcement authority to punish device makers who delay or fail to disclose information.

Please alert your networks, family and friends. Encourage them to express their support for the bill and to thank Senator Boxer.

Mary and I will be in Washington, D.C. next month and we’d love to hear the Senator tell us about all the emails she received from in support of the bill!

March 17, 2008

Kacey Long on NPR.org: The Next President Has to Care About Women’s Health

Here’s Kacey making a political statement on National Public Radio’s Get My Vote campaign:

Everyone in the Beauty and the Breast community, please go to the Get My Vote campaign and “recommend” Kacey’s video so other people will know to watch it!

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