Provider information page on stepspeakout

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

We were feeling like we wanted to get some medical information on a page, and it's written for health care providers--so it may read like "jargon"--but it was written in response to a perceived lack of information in the medical community about lymphedema.

So, here's the link, and tell us what you think.

http://www.stepup-speakout.org/essential%20informat%20for%20healthcare%20providers.htm

We left up the "what we want our providers to know", because they're two different things--what we think providers should know, coming at them from a health care perspective, and the other is from a patient perspective.

Kira

· Share on FacebookShare on Twitter

Comments

  • BoobsinaBox
    BoobsinaBox Member Posts: 550
    edited February 2011

    Wonderful, Kira!  I thought I saw a couple of spelling errors (not sure), but it is an excellent article.  Should Morbidies be Morbidities?  Should multifactorial be multifactoral?  Thank you so much!

    Dawn 

    · Share on FacebookShare on Twitter
  • kira66715
    kira66715 Member Posts: 4,681
    edited February 2011

    Dawn, you're right--I'll look for those--and fix them. Thanks! When spell check doesn't recognize lymphedema, you tend to get weird spell check responses.

    Kira

    · Share on FacebookShare on Twitter
  • otter
    otter Member Posts: 6,099
    edited February 2011
    "Multifactorial" -- with an "ial" -- is the correct spelling (weird as it seems), when someone is talking about several factors being involved:  http://medical-dictionary.thefreedictionary.com/multifactorial
    · Share on FacebookShare on Twitter
  • CherylG711
    CherylG711 Member Posts: 102
    edited February 2011

    Great information....printing and mailing to my PCP who wants to be helpful but really doesn't have a clue about lymphedema.

    · Share on FacebookShare on Twitter
  • BoobsinaBox
    BoobsinaBox Member Posts: 550
    edited February 2011

    Kira and Otter,

    If it is multifactorial instead of multifactoral, then there is a place that needs to be corrected that way!  I saw both in the article.  (Otter, factorial has a specific meaning in math, and I thought it was an error here.  Thanks for setting the record straight!)

    Dawn 

    · Share on FacebookShare on Twitter
  • Binney4
    Binney4 Member Posts: 8,609
    edited February 2011

    Dawn, too funny! You don't think it's okay if we hedge on this and spell it both ways?Innocent One is bound to be right!Wink

    No, huh?Undecided

    Kira, I like where you say "perceived lack of knowledge" in your post. Yep! We've all perceived that, all right!Laughing 

    Be well,
    Binney

    · Share on FacebookShare on Twitter
  • BoobsinaBox
    BoobsinaBox Member Posts: 550
    edited February 2011

    Wish I'd thought of that Binney!

    Dawn 

    · Share on FacebookShare on Twitter
  • otter
    otter Member Posts: 6,099
    edited February 2011

    I always seem to be looking for the "Like" button on these Boards!  Of course!  SU-SO was hedging on that.  :)

    otter

    [P.S.:  Guys, I think maybe Dawn should be brought on board as a proof-reader.]

    · Share on FacebookShare on Twitter
  • BoobsinaBox
    BoobsinaBox Member Posts: 550
    edited February 2011

    Otter,

    I had a job many years ago that included proofreading.  I called myself a preafrooder because no matter how carefully or how many times, I always missed something!

    I love the sense of humor I find here!

    Dawn 

    · Share on FacebookShare on Twitter
  • LindaLou53
    LindaLou53 Member Posts: 929
    edited February 2011

    Kira this is an EXCELLENT resource and one I will be sending to many healthcare professionals in my area. Thank you for taking the time and effort to compile the links to relevant research data In addition to your comprehensive presentation of the many aspects of Lymphedema that every healthcare professional should be aware of. You have made a valuable contribution to the LE community with this effort!

    · Share on FacebookShare on Twitter
  • kira66715
    kira66715 Member Posts: 4,681
    edited February 2011

    Thank you Linda--it truly was a group effort-it needed serious editing, and as Dawn points out, some more proof reading. I just got so tired of the rampant ignorance...And at first, it came out as too harsh, so it needed toning down.

    It will always be a work in progress, and I'll try and add/delete as more information becomes available.

    Kira

    · Share on FacebookShare on Twitter
  • toomuch
    toomuch Member Posts: 901
    edited February 2011
    KIRA--I read this with interest both from the patient and physician perspective. I think that it's terrific. My LE therapist holds lectures for surgeons in the area and she has told me that many don't come and many that do claim that there patients never get LE. I'm going to bring this with me when I see her next week. Is it ok if she distributes it to surgeons in the area? Maybe if she includes it with the invitation to the education lectures, more providers will attend! Many thanks for all the work you do on behalf of all of us.
    · Share on FacebookShare on Twitter
  • LindaLou53
    LindaLou53 Member Posts: 929
    edited February 2011

    I have already shared this link with several excellent LE therapists in my local area and they have responded with great enthusiasm to the article.  They tell me they will be sharing this within their medical circles to both physicians and healthcare workers.  The major medical center which sponsors our LE Support Group is providing a grant that will include early LE education, pre-treatment measurement and post-treatment followup within the cancer community.  I have forwarded Kira's article to the grant applicant who is thrilled to have access to the many research papers and clinical data supporting their proposal for an early detection program.

    · Share on FacebookShare on Twitter
  • KS1
    KS1 Member Posts: 632
    edited February 2011

    This is an amazing piece - better than any pamphlet I have seen!  Would you consider explicitly saying on the link that you give permission for other people to print and distribute the contents.  You can still keep the copyright.  I would have loved to have this information in the packet of info I got before my surgery.   KS1

    · Share on FacebookShare on Twitter
  • SleeveNinja
    SleeveNinja Member Posts: 178
    edited February 2011

    Ditto - excellent informtion. Wonderful. WELL DONE!!!!!

    · Share on FacebookShare on Twitter
  • kira66715
    kira66715 Member Posts: 4,681
    edited February 2011

    Of course it can be distributed and linked--I'll officially check with Jane and Binney-- but that was what we intended. On the web page there are imbedded links, so if and when you distribute this, just give them the URL as well so they can access all the articles and videos.

    The page was written to disseminate information, so please disseminate, and I'll ask Jane--of the brilliant legal mind--about how to make that clear on the page.

    Thank you all so much.

    Toomuch--when that Brigham and Women's surgeon dictated "no LE" last week, and the woman had a 4 cm discrepancy between arms, I sure dictated the measurements and faxed it right up to him and the Dana Farber oncologist. Put that in your medical record! Denial got me so steamed, I'm used to rampant ignorance.

    We have a lot of knowledgable women on the boards and on this thread, and please use the page in any way you think would benefit people with LE.

    Kira

    · Share on FacebookShare on Twitter
  • kira66715
    kira66715 Member Posts: 4,681
    edited February 2011

    Alyson shared this page from the official breast cancer site in New Zealand--if you go to the professionals page, there are several algorythms for diagnosing and treating LE, for the GP (not the surgeon or onc.).  There are lots of good resources on the page.

    So, New Zealand was ahead of us, but it's another resource for us.

    http://www.lymphoedemanz.org.nz/

    Kira

    · Share on FacebookShare on Twitter
  • kira66715
    kira66715 Member Posts: 4,681
    edited February 2011

    Binney has just shared with me that the new position paper from the NLN on treatment, goes in detail into diagnosis and management, and is really comprehensive. We are getting more information tools to share with the uninformed:

    http://www.lymphnet.org/pdfDocs/nlntreatment.pdf

    Kira

    · Share on FacebookShare on Twitter

Categories