LymphConnect.com

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kira66715
kira66715 Member Posts: 4,681
edited June 2014 in Lymphedema

A few weeks ago there were some new videos on YouTube and I posted them. The doctor in them is a general surgeon in private practice in California. The videos were pulled, and then this popped up on my google alert about LE--the formation of a new site about LE with the goal to spread information and awareness and get insurance coverage.

But, I still can't figure out who is running this site.

Here's the announcement about it:

http://finance.yahoo.com/news/Comprehensive-Lymphedema-bw-2329431066.html

LOS ANGELES--(BUSINESS WIRE)-- Emphasizing the notion that "Lymphedema doesn't have to be a secret," a new online resource site, www.lymphconnect.com, has been developed to spread the word about the largely misunderstood condition suffered by hundreds of thousands of women. The site is designed to provide a comprehensive informational resource and support network for women living with lymphedema and their loved ones and families, as well as anyone faced with breast cancer in general.
After the physical and emotional rigors of a mastectomy or lumpectomy as part of the fight against breast cancer, patients often need to undergo extensive radiation or chemotherapy treatments as well. Unfortunately, for many of those who successfully beat breast cancer, there is a chance they could face the potentially debilitating post-breast cancer condition called lymphedema.
Largely under diagnosed and misunderstood, lymphedema is a condition resulting from damage to the lymph nodes that causes swelling in the limbs. Early detection is critical for survivors of breast cancer to manage and control the condition. However, the majority of women are unaware that lymphedema is a risk associated with breast cancer treatments. Too often, the condition is not diagnosed until after swelling is visible, the point at which the progression of the disease is often irreversible.
The hope of LymphConnect.com is to create a community of breast cancer patients and survivors, friends and family, who support the education, prevention, early detection, intervention and treatment of lymphedema. The site creates a forum that offers women the opportunity to get proactive about the condition by sharing their stories and learning those of others via the site's built-in online support community. The site also contains regularly updated news and information about the condition and related research, question and answer opportunities with medical professionals, and information empowering readers to spread the word about the condition.
The ultimate goal of LymphConnect.com is to generate increased awareness and knowledge of lymphedema, as well as a support network so that more breast cancer survivors will have the resources necessary to be informed and to become advocates for early detection and awareness. The easy-to-navigate and interactive site goes live this month.

Contact:
For LymphConnect.com
Paul Williams, 310/569-0023
paul@medialinecommunications.com

And here's the site:

http://lymphconnect.com/

I guess, I'd just like to know who I'm sharing my story with and for what. A little more transparency would be good, for me.

The Expert, for Ask an Expert, is Jay K. Harness, and here is his site:

http://www.drjayharness.com/

Kira

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Comments

  • Binney4
    Binney4 Member Posts: 8,609
    edited December 2011

     I'm going to hazard a guess that this is a project of the Impedimed folks who sell the bioimpedance devise, since lots of the "Expert's" answers have to do with bioimpedance. The devise itself has been hyped to detect (as in "diagnose") early LE, but that has not been shown to be the case, and it certainly should not be depended on in that way. Hopefully with some improvements it may someday become a dependable way to evaluate LE, but we're not there yet.

    Their "resources" page lists the NLN and several bc organizations, all of which are legit. It also, however, lists eLymphnotes which I personally would never steer anyone to (not to be confused with the Lymphnotes.com site which does have some useful articles on LE).

    So until proven otherwise, this looks like an advertising venue, and I hope they'll decide to be more up-front about it. Not nice to ask people to share their stories without identifying themselves.

    We should not have to be guessing around about this. Especially since their slogan is that "lymphedema doesn't have to be a secret."
    Binney
     

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  • Stratford
    Stratford Member Posts: 1,142
    edited December 2011

    Watch the video on the front page of lymphconnect for confirmation that it's an advertising or PR site. The scripted questions and answers always get back to bioimpedance devices. Wonder if the PR guy listed as a contact has a device-maker as a client?

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  • kira66715
    kira66715 Member Posts: 4,681
    edited December 2011

    You guys are so smart: I was reading the stories, and there's this one where a woman developed swelling, but thanks to her wonderful doctor who got her MLD and measured her with bioimpedance at every visit she "avoided lymphedema".

    When the Avon White Paper came out, it is a strong push for bioimpedance as the gold standard for diagnosing LE early.

    I emailed one of the authors who says he finds it useful in research, but I spoke to Mei Fu who has used it in research and finds bioimpedance to be unreliable in women with LE: the numbers would be consistent at one visit only 66% of the time, and would read normal with clinically advanced LE. 

    Binney emailed one of the bioimpedance companies, and they had me speak to the medical director, who strangely, had the same last name as the technical director, and he was a nice breast surgeon, in private practice, who got a grant to use it and liked it, and his web site showed no university affiliation and that he was using all sorts of devices in his practice, and he had no idea of the science behind it.

    Another clue is on the about page, where they talk about getting insurance reimbursement.

    So, women with LE are being asked to share their stories to further the marketing of a measurement device that has a caveat on it's website that it is not intended to diagnose LE, but as an assessment tool, and they sell the electrodes--one set for each use--for $40 a pop.

    ARGH.

    Kira

    I went on their facebook page and under the woman who shared that bioimpedance helped her avoid LE: I wrote "Actually you DID develop LE." 

    And under their triumphant banner of four women holding hands above their heads, I wrote "No compression garments?"

    I'm sure they'll delete those comments....

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  • kira66715
    kira66715 Member Posts: 4,681
    edited December 2011

    I did some more research, and this lymphconnect site is just so similar to the imipedimed site:

    http://us.l-dex.com/ 

    And yet if you go to the L-dex site: http://www.impedimed.com/products/l-dex-u400/  you'll read:

    Note: This device is not intended to diagnose or predict lymphedema of an extremity.

    I'm all for lymphedema awareness and solidarity, but I sure do resent a device maker soliciting private patient stories to market their device.

    Kira

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  • kira66715
    kira66715 Member Posts: 4,681
    edited December 2011

    So, now that I've figured out that Impedimed is funding LE research, supporting position papers, and the potential payoff to them is HUGE: $40 a patient/visit for all breast cancer patients, if they get legitimacy and research to support their device.

    I posted on their facebook site for Lymphconnect, asking why the women weren't wearing compression garments, and that the woman who did develop LE, but states she avoided LE thanks to bioimpedance still has LE, and guess what--they removed my comments.

    I think I've burned every bridge I ever had with the LE researchers and foundations who supported the Avon White paper, but why can't they be honest about their financial conflicts of interest and the fact that they're pushing a device that is not intended to diagnose LE, and has real reliability concerns, as groundbreaking research with the potential to diagnose LE at a point where it can be potentially reverersed? 

    That data came from a perometry study.....And has never been replicated--although MGH was gatehering data to attempt to do so.

    And now, Stanley Rockson is starting an LE registry, with the same language about new technology--hopefully he'll use the sensitive data in an appropriate manner and actually evaluate the information in a way that will help us.

    Kira

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