• full right arm down into fingers

    Posted Apr 20 by Vicki Joice


    Hi, everyone, I've been dealing with right arm down into my fingers lymphedema for almost 3 years now.  Secondary to stage 1 triple positive breast cancer.  Caught it early!  Thank You, God.  I had 2 Read More...

  • What a difference a year makes

    Posted Jan 7 by Tom Freeman


    A post to my profile reminded me that I should post a brief update from the last year.  My original questions on how/when to wear my garments - I figured out a good routine that I used for most of 2019.  I wore Read More...

  • Need some advice/ help

    Posted September 6, 2019 by Kurt Kurt


    Hello all. I am looking or some advice with a situation I am having. For the past couple years I have been dating someone with lymphedema. It was not disclosed to me when we first had started dating of her situation the Read More...

  • Will You Lose the Right to Sue a Drug Company When You’ve Been

    Posted July 15, 2019 by William Gautier


    Prescription drugs, according to the American Medical Association, are the 4th leading cause of American death behind only heart disease, cancer, and stroke. They are killing more people in the U.S. and Canada every year Read More...

  • Help?

    Posted March 5, 2019 by Pat Truman

    1 Like 675 Views

    Hello, I have just joined. I am having a hard time finding any responses to people's questions. I am looking for exchanges about arm lymphedema following mastectomy. Can someone help me find such conversations? I would l Read More...

  • "Self-Service" part of my recovery

    Posted January 7, 2019 by Tom Freeman


    Hello all!  A quick background on why I'm here, what I hope to gain, and what I hope to give. I'm a car guy - I've been doing amateur motorsports since 2002.  I've dented a few cars, but I've never been "dente Read More...

  • Angela Gamble

    Posted September 21, 2018 by margaret webb


    Happy birthday to Angela Gamble

  • Leg cramps

    Posted September 19, 2018 by margaret webb


    How much liquid magnesium do we put in eight ounces of water to stop leg cramps? Do I need anything else? I have been eating eight oranges a day but that doesn't seem to work anymore. Thanks

  • Morning

    Posted September 17, 2018 by margaret webb

    1 Like 1,384 Views

    Good morning everyone!! I hope everyone has a pain free and no swelling day. A girl can dream!!

  • Need some advice

    Posted September 16, 2018 by margaret webb

    2 Comments 1 Like 1,525 Views

    I am new to this 'Blogs' stuff.  I have a question.  I have to wear shoes that are for broken toes.  There are open toes and I can tighten and loosen them as needed during the day.  How do other peopl Read More...

  • Lymphedema Treatment Options That WORK

    Posted August 14, 2018 by Brenna M.

    7 Comments 1 Like 4,279 Views

    It’s been three years since I underwent LVA and I have a promising update to share with those interested in the procedure: it works and three years later, I’m still experiencing benefits. What’s LVA? Read More...

  • Harriette’s blog

    Posted May 26, 2018 by Harriett Richard


    This is a recent blog posting of mine. It contains 2 others on lymphedema. Hopefully, it will serve as my introduction. I’m happy to find this community.

  • Janet Eccles

    Posted February 18, 2018 by Janet Eccles


    Thanks for the add on. Little bit about myself. I have a very rare condition called Cogans Syndrome, and with it can a long list of medical conditions. This being one of them. I'm hoping to get as much info as possible. Read More...

  • My wife's Lymphedema

    Posted December 5, 2017 by Galasso Carol


    Hello Everyone, I am writing this for my wife Carol who has recently been diagnosed with Lymphedema. The condition is in her right leg from the knee down to and including the foot. The treatment that has been recommende Read More...

  • Sharing 25 Years of Experience as a Lymphedema Patient

    Posted January 25, 2017 by Cade Flin..

    1 Like 4,783 Views

    I have had lymphedema for all 25 years(so far) that I have been on this earth. There is an astonishing amount of misinformation and lack of information available for patients and professionals, so I thought I would share Read More...

  • Lymphedema and Dating

    Posted November 2, 2016 by Tony M


    Well I hear a lot talk about self esteem when it comes to women with lymphedema dating. I find it difficult to find a date with someone who has it though. There are guys like me that understand the disease and unlike mos Read More...

  • Question

    Posted October 7, 2016 by Marge Naab

    1 Comment 1,642 Views

    I am new to lymphedema I don't understand how or why I got this. It is my left arm that is swollen and I have one enlarged lymph node in my left arm pit. If lymph node goes down will the swelling in my arm go down too? Read More...

  • Lymphedema after knee surgery

    Posted October 5, 2016 by Donna Payne


    I had total knee replacement in May, and developed Lymphedema approx 2 months later. Is there any advice as to how to deal with this, diet, excercise, etc.? I am wearing custom compression thigh high for the affected leg Read More...

  • Bandaging post knee surgery for non lymphedema

    Posted October 10, 2015 by Mary Ann Sandoval Obadiah

    1 Comment 2,134 Views

    I hope it is ok to ask this question here.  I am a lymphedema therapist, although I have been home taking care of toddler for a while now.  This is a personal question about my own care, however.   I don Read More...

  • lipedema and lymphedema

    Posted August 5, 2015 by Sandra McCrea


    wondering how many others have this - My legs are greately affected and arms aren't much better.  Has anyone had success with MLD therapy?

  • Declined by Insurance for LVA

    Posted July 7, 2015 by Lori Fuller


    My sister and I both are candidates for LVA surgery with Dr. Chen in IowaCity, IA. My sister Wendy Boylan is at stage 4 and stage 5 in her legsaccording to the lymphograph. (sp) The insurance company has just deniedher s Read More...

  • truncle le

    Posted June 11, 2015 by sandra renaud


    Hi I have had truncle le for 8 year The only treatment I have done was compresson and it gave me  more pain after I removed the vest. I am on 30 mgs of slow release morphine and am not getting the same pain managmen Read More...

  • LVA is Effective Treatment for Lymphedema

    Posted May 1, 2015 by Brenna M.

    2 Comments 1 Like 38,519 Views

    I recently underwent surgical treatment for primary lymphedema in my right leg. The procedure, called LVA (Lymphaticovenous anastomosis) was performed on April 21, 2015 and I’m already seeing a significant improvem Read More...

  • Lymphedema 16 years after cancer

    Posted December 13, 2014 by Deb P


    I have recenctly been told I have lymphedema and been told I can't get in to see the physical therapist until the 23rd of this month. Is there anything I can do to my arm to keep it from swelling up more? And my doctor w Read More...

  • lymphedema in abdomen

    Posted September 23, 2014 by veda beck


    hello I was wondering if anyone  has Lymphedema in their abdomen? I am obese but i only have it on the  right side of my abdomen. any comments would help

  • Alternative to bandages

    Posted August 5, 2014 by Nathalie B


    Hello! I have not posted in a long time, but I think is time I share that kinesio taping has been working very well for me, I was able to learn how to do it by a therapist and now I do it myself. I have not used compres Read More...

  • Kidney functions and lymphedema?

    Posted July 28, 2014 by Jim Miller

    1 Comment 4,359 Views

    Has anyone found a relationship between primary lymphedema and kidney functions? Or dysfunctions, I should say? I've had primary lymphedema since 1967, it's well managed since 2009 with CDT, MLD, nightime compression, da Read More...

  • A HINT to avoid one cold leg at night.

    Posted June 13, 2014 by Anne Rock

    1 Like 3,380 Views

    I have a solution tor those who have one-leg Lymphedema to keep the normal leg at about the same temperature at night as the one that is wrapped. I insert the Lymphedema-side leg of a pair of pa Read More...

  • Bandaging question

    Posted April 28, 2014 by Julie Deane

    1 Comment 40,439 Views

    I'm a new therapist. When I unwrap my patients bandages there are areas of raised fluid filled skin at the tibia and on the sides where there is space between the foam this normal? Can this be avoided?

  • Coban 2 for LE

    Posted April 14, 2014 by Sasha Vinokur


      Has anyone used Coban 2 with lymphedema patients instead of bandaging?  Or have any information about this.   Also, to those therapists who have students interested in Lymphedema, how much do you let Read More...

  • Armsleeves

    Posted April 4, 2014 by Kathy Warwick


    I have Lymphedema in one arm brought on recently by a mastectomy 15 years ago.  I am struggling to find the most effective armsleeve and am currently looking at the Jobst Bella Strong and Jobst Bella Lite. Does anyo Read More...

  • Solutions For Contract Management To Increase Efficiency

    Posted December 18, 2013 by Phoebe Atkins


    In previous years, before the current economic downtown, project managers found it easy to get contracts. The number of contracts applied for were awarded at a much higher rate than they are today. Therefore, it is impor Read More...

  • lymphedema and cold laser

    Posted December 4, 2013 by Constance Miller


    Looking for research articles on treatment of lymphedema, post breast surgery, with cold laser.  Anyone have any good articles to share?

  • Arm Lymphedema

    Posted November 4, 2013 by Charlotte Marx


    I am a breast cancer survivor while in radiation treatment I got arm Lymphedema,I am now 4years in remission remove my chemo port in July 2013 reason sepsis after remove my port my health was much better i was sick all t Read More...

  • my fight

    Posted October 13, 2013 by rafael zuniga


     im rafael i have lyphedema  brought on by being extremely obese . i have always been overweight  and for the most part lived a normal life until 2008 when i started gaining more weight than ever. As an ad Read More...

  • Truncal LE wear poolside and for boating

    Posted August 25, 2013 by Veal Jan


    I have LE in my right arm, half of my right back and all down my trunk. I can handle the arm and back, but the trunk hurts all the time from the swelling, and I am already in stage 3 compression. My question is what do y Read More...

  • Summer camp

    Posted July 3, 2013 by Jocelyn Bateman


    Today my foot swelled up to a pretty large size today. I work at a summer camp and that means children, lots of children. And with children come questions; questions that I do not want to answer. And if you havent guesse Read More...

  • Dr. Granzow

    Posted June 24, 2013 by Victor do Valle


    Hello, I am Brazilian, though here have good treatments, there is definitely something that really solve the problem, I'm looking for something new and also found interesting the surgeries dr. Granzow, someone has alread Read More...

  • Latest news on Lymphatic surgery

    Posted May 23, 2013 by Helen Bonynge


    This is a link to a symposium on the latest advances in Surgery for Lymphedema.. It is from the Anderson Cancer centre and the doctor is David W Chang MD.. Very interesting and well explained .. He also tells the good an Read More...

  • Lymph Node Transplants

    Posted May 7, 2013 by Helen Bonynge

    11,065 Views Blog about the surgical interventions for Lymphedema... Patients stories

  • Lymphedema Treatment Act Update:

    Posted March 26, 2013 by Jenny Sterner

    1 Like 5,944 Views

    Lymphedema Treatment Act Update:  March 26, 2013   We are still in the process of building our state teams to advocate for the Act. To date we have teams in 31 states - can you help us reach our g Read More...

  • Lymphedema Treatment Act Update:

    Posted February 10, 2013 by Jenny Sterner


    Lymphedema Treatment Act Update:   Our sponsor for the 113th Congress, Congressman Dave Reichert (R) of Washington State, who is a majority member of the powerful House Ways and Means Committee to which our b Read More...

  • My lymphedema story

    Posted December 22, 2012 by Lympha Yogi

    1 Comment 6,357 Views

    HI Everyone!  I just wanted to say hello and share a little about my story.  I am a 24 year old female with primary lymphedema.  I was diagnosed when I was 11 after a battery of various tests.  My lym Read More...

  • Pumping on Flights

    Posted November 21, 2012 by Anne Rock


    Has anyone experienced using a compression pump on an airlines? I have Lymphedema in my left leg, so of course it needs to be straight as I use my pump. How have you arranged this?

  • Lymphedema Treatment

    Posted October 4, 2012 by Rosa Covarrubia


    I just want to let the community out there know that I had a mastectomy on November 20, 2008, followed by chemo and radiation. Thirteen lymph nodes were removed including the axilla area. I have lymphedema. After li Read More...

  • Lymphedema Treatment Act Update--September 2012

    Posted August 31, 2012 by Jenny Sterner

    1 Like 4,657 Views

    Lymphedema Treatment Act Update:   Going into the August recess our cosponsor count was 89. Although members of Congress and their staff still receive and review your letters, during recess new cosponsors cannot b Read More...

  • night sleeve

    Posted August 17, 2012 by Mary Angel

    4 Comments 209,962 Views

    I didn't know I had so much to say. Does anyone know of a good night sleeve that is reasonable priced. The ones I have seen online are so high in price. It just might be the nature of the beast, but thought I would give Read More...

  • ads for sleeves

    Posted August 17, 2012 by Mary Angel

    2 Likes 6,757 Views

    Just throwing out one of my observations.  I am looking online for a new sleeve. Don't you just love the models of the compression sleeves with their skinny little arms that look more like anorexia then someone with Read More...

  • lymphedema a speed bump

    Posted August 16, 2012 by Mary Angel

    2 Likes 9,636 Views

      Just found this site. "Bar fight gone bad on a Saturday night" is my usual response when someone asks about my thickly wrapped arm. Easier then explaining breast cancer, the removal of lymph nodes, lymphphatic&nb Read More...

  • Please Help

    Posted July 7, 2012 by melinda kirkley


    My name is Melinda and I am 34 yrs old. I was diagnosed with cellulitis and lymphedema on October 9, 2011. I had had surgery on my right ankle and the dr put a drain in my leg because she said she had to stretch my calf Read More...

  • MA RN lymphedema

    Posted April 14, 2012 by Donna Jasset


    Hi,  I am new to this blog and hoping I can get some direction.  I am an oncology nurse and took the lymphedema certification class last July, offered by the Norton School in Boston.  I am trying to change Read More...

  • Lymphedema Treatment Act--April 2012

    Posted April 3, 2012 by Jenny Sterner


    Happy spring!At your earliest convenience, if possible, please take just five minutes to submit letters to your members of Congress using the links to the left.  Our website logs every letter sent, and unfortunately Read More...

  • Lymphedema Treatment Act-- March 2012 Update

    Posted April 3, 2012 by Jenny Sterner


    Lymphedema Treatment Act Update / March Newsletter:   As of this writing, HR 2499 has 62 cosponsors!  Please help us reach our goal of getting to 100 this year.  To view the list of cosponsors go to  Read More...

  • Surgery for Lymphedema

    Posted March 12, 2012 by corcoran corinne


    Has anyone heard of Dr. Granzow and his surgeries for lymphedema? Here is a link to his website. I would love to have any feedback.  Thanks, Corinne

  • Lymphedema Treatment Act Update - Dec. 2011

    Posted January 13, 2012 by Jenny Sterner


    A heartfelt thanks to all of you who have helped to make the accomplishments of 2011 a reality!  Highlights from 2011 include:   On June 12, 2011, HR 2499 was introduced in the House and to date has garnere Read More...

  • Lymphedema Treatment Act Update – HR 2499 Staff Briefing Nov 3r

    Posted October 22, 2011 by Jenny Sterner

    1 Like 11,055 Views

      We need your help with a very quick and easy but important task.  Please go to our website - - and visit the Contact Your Representative and Contact Each Of Your Senators pages Read More...

  • For your soul !

    Posted October 1, 2011 by cosmina cocan

    1 Comment 2 Likes 20,400 Views

    A philosophy professor stood before the class with the  depratment with a few things. When the class began, without saying a word, took a large empty jar, wich he field with golf balls. Aasked the students if the ja Read More...

  • LTA DC Lobbying trip--Nov. 2-5, 2011!!

    Posted September 2, 2011 by Jenny Sterner

    1 Like 4,715 Views

      This year’s trip to DC will be Nov. 2–5, 2011.  Please visit our website for complete information -     Wa Read More...

  • A little Profile Help, Please

    Posted August 6, 2011 by Mary Shoup

    1 Comment 39,043 Views

    Can I get my Facebook Photo to show here for the lymphedema community? If so, how? Thx everso.

  • LTA Update - 8/1/11

    Posted August 1, 2011 by Jenny Sterner


    RE:  Lymphedema Treatment Act Update Thank you so much to those of you who have already contacted your members of Congress.  As of August 1,  HR 2499 has 21 cosponsors!Please go to www.Lym Read More...

  • Lymphedema Bill Re-introduced to Congress!!

    Posted July 21, 2011 by Jenny Sterner


    Lymphedema Treatment Act Update:   The Lymphedema Diagnosis and Treatment Cost Saving Act of 2011, HR 2499, has been reintroduced!   It is now very important that you send letters to your members of Congres Read More...

  • Change management and Lymphedema

    Posted June 23, 2011 by Jim Miller

    2 Comments 2 Likes 58,076 Views

    One thing I've found helpful in my 43 years of managing my own primary lymphedema (mostly in my left and now entering right leg) is associating changes in my condition to changes in my lifestyle or activities. I often as Read More...

  • Had To Say It

    Posted June 17, 2011 by Michele E.

    2 Comments 8,161 Views

    Two blogs in a week!  I can't stop......   In my most recent blog, I shared about the feelings of self I've experienced when it comes to being noticed by the opposite sex.  Yikes - will he see the lymphe Read More...

  • Dating with lymphedema - 2

    Posted June 15, 2011 by Michele E.

    16 Comments 110,959 Views

    Dating is tough when you’ve had so many bad experiences and poor self image because no one understood your condition.  All I could remember thinking when I was younger and even recently is that:   *I am Read More...

  • LTA Update, June 1

    Posted June 10, 2011 by Jenny Sterner

    1 Like 2,771 Views

    On May 25th a stakeholder’s meeting took place at the DC office of Congressman Larry Kissell, our bill sponsor, to review a recently completed draft of the bill.  Since the start of the new Congress in January Read More...

  • Dating and Lymphedema

    Posted June 10, 2011 by Michele E.

    1 Like 49,584 Views

    The dating environment has changed dramatically from mom and dad “recommending” your mate to picking him/her out of a line up (you know the web).  I was one that said I would shy away from the web, but i Read More...

  • What gestures we make us women, sexy

    Posted June 10, 2011 by cosmina cocan

    2 Comments 77,330 Views

      I've always been in search of "quelque Chose" ... and still are! That is why I documented ... I'm especially conditioned by a medical problem as well as some of you! So I kinda discovered things about what we do, Read More...

  • Lymph node transfer

    Posted May 20, 2011 by Kari Stuart


    Has anyone had the lymph node transfer procedure done?  How successful is it?

  • laser hair removal safe?

    Posted May 6, 2011 by Kari Stuart


    Anyone had laser hair removal?  I know I am not supposed to shave but I just do not feel pretty with hairy legs.  I have lymphedema in my legs.  Can I safely get laser hair removal done on my legs?

  • looking for provider in area

    Posted May 4, 2011 by S K

    1 Comment 8,390 Views

    Hello, I am new to the area of Whidbey Island, Washington and am seeking a certified therapist.. I have had treatment for lymphadema for approx 1 year and need additional care due to the lymphadema (c 4/6 disc, si and hi Read More...

  • Lymphedema Treatment Act Update (5/1/11)

    Posted May 1, 2011 by Jenny Sterner

    1 Like 4,191 Views

    We are pleased to announce two wonderful additions to our website: we now have a Resources for Patients page, ( and a sampling of submissio Read More...

  • LymphedemaGirl

    Posted April 29, 2011 by Liz N

    1 Like 685,235 Views

    Hi fellow lymphers, you are all very welcome to visit my blog about living with Lymphedema:

  • Lymphedema Treatment Act

    Posted April 16, 2011 by Jenny Sterner

    1 Like 5,005 Views

    We need your help spreading the word about the Lymphedema Treatment Act!To assist you in doing so we would be happy to send you information cards to distribute to your doctor’s office, treatment center, garment fit Read More...

  • Lymphedema Treatment Act update

    Posted April 2, 2011 by Jenny Sterner

    1 Like 3,812 Views

       For those of you who have not yet been to the new Lymphedema Treatment Act website I encourage you to check it out and to also visit the new  Blog, Twitter and Facebook pages for the bill.  For fu Read More...

  • My website

    Posted January 24, 2011 by Alexa Ercolano


    Hey, everybody!! I joined this site to hopefully bring more visitors to a blog I recently started for young adults with lymphedema. Please check it out, and let me know what you think! Copy and paste into your address b Read More...

  • December 9, 2010 Update

    Posted December 9, 2010 by Jenny Sterner


      Since my last update we’ve picked up one more cosponsor – Congressman Lewis (GA-5) – bringing our total to 58.   If you have not yet sent a note of thanks to Congressman Kissell for h Read More...

  • Lymphedema Bill Update 11/16/10

    Posted November 17, 2010 by Jenny Sterner


    Dear HR 4662 Supporters, Due to Congress having been on recess, and everyone’s attention being focused on campaigning before that, it had been some time since we’d picked up more cosponsors.  But yest Read More...

  • Lymphedema Bill--now what?

    Posted November 5, 2010 by Jenny Sterner


    As I thought might occur after the election, people are asking me “If my Representative is not yet a cosponsor do I continue to contact his/her office (especially if he/she was not re-elected) or wait until next Read More...

  • Lymphedema Bill Complete Election Update

    Posted November 4, 2010 by Jenny Sterner


       Here is how the HR 4662 Cosponsors fared: Of our 53 cosponsors (complete list below) three did not seek re-election.  They were Peter Hoekstra, Kendrick Meek (who ran for the Senate in Read More...

  • New member needs advice

    Posted October 15, 2010 by Sharon Koller


    I'm unable to put on short stretch bandages of my arm & hand due to neuropathy.  It is impossible to get the right gradient doing by yourself.  My lymphedema is getting worse.  Any new products out there f Read More...

  • Let's get the LE dx and tx bill passed soon!

    Posted October 3, 2010 by Barbara Pilvin


    I've sent letters and my own story to anyone in or outside Congress who might, just might, read them and get motivated.  I know plenty of other people have done so as well.  Here's a reason for doing so that I Read More...

  • "Share Your Story" Campaign

    Posted September 19, 2010 by Jenny Sterner

    1 Comment 3,982 Views

    Dear HR 4662 Supporters, This update is devoted to announcing a new way in which you can help.  We are launching the “Share Your Lymphedema Story” campaign!  Complete information is below. I a Read More...

  • HR 4662 and the American Cancer Society

    Posted September 3, 2010 by Jenny Sterner

    1 Like 3,633 Views

    Hello, I heard that some people were having trouble with the links to the American Cancer Society.  There are two new ones below so hopefully no one will have any problems with these.  http://action.acscan. Read More...

  • Farrow Wraps

    Posted August 23, 2010 by Dale Rutala

    3 Comments 4,477 Views

    Hi, I am new to this site. I recently received information on a compression product called Farrow Wrap. It claims to be a short stretch compression wrap that is premade and you trim it to fit. I am recently certified and Read More...

  • HR 4662 - Lymphedema Cost Relief Bill on Capitol Hill

    Posted July 2, 2010 by Kathryn Krastin

    8 Comments 3,490 Views

    If you have been following me on my BEYOND WORDS LIVE radio show on BlogTalkRadio you will have heard several advocates speak out about the bill, what they have been doing in Washington, DC, and what still needs to be do Read More...

  • new to this site

    Posted April 26, 2010 by Kathy B

    13 Comments 2,822 Views

    Hello all, I'm new to this website.  I am a member of another LE website and find it very helpful.  I am hoping to find that here.  I am a bit taken back by everyone using real names and pictures. Read More...

  • Emotional Well-being

    Posted April 23, 2010 by Kathryn Krastin

    10 Comments 2,800 Views

    Hey, just wanted to share with you all a book that I discovered through a place called LYMPHEDEMA PRODUCTS, LLC.  ( that focuses upon the emotional well-being of a lymphedema p Read More...

  • Employer is Changing Insurance Companies...

    Posted April 15, 2010 by Kathryn Krastin

    9 Comments 2,516 Views

     I hate change when one has been having a great response to Blue Cross Blue Shield in the past with the paying for lymphedema treatment costs and garments, pump, etc.  Now, my employer (due to cost factors) are Read More...

  • National Lymphedema Awareness Day - Radio Show

    Posted March 6, 2010 by Kathryn Krastin

    7 Comments 2,604 Views

     In case you missed the show, you can still hear the show at   Please pass this  link to others to bring about Read More...

  • How can this site serve you better?

    Posted February 11, 2010 by Steve Norton

    13 Comments 3,526 Views

     Hello Lymphedema Community members!   As you can see we are nearing the 500 member mark which is wonderful. There's been much blogging taking place and many friendships forming. With this short note I wa Read More...


    Posted February 6, 2010 by Kathryn Krastin

    20 Comments 3,075 Views

     Okay...  So if I get another prescription from my doctor here in Austin, TX, vowing to not to go to the vendor that I am used to going to for over a year (because my doctor doesn't like the vendor), wher Read More...

  • Okay, so this isn't a story about LE...

    Posted January 30, 2010 by Kathryn Krastin

    5 Comments 2,570 Views

     ... but this is certainly a story of someone taking a different perspective of her ordeal with MS and taking it to a new height.     Please go to her page and read her phenomenal story for added inspira Read More...

  • Surgeries?

    Posted January 26, 2010 by Kathryn Krastin

    9 Comments 2,313 Views

    What do we know about surgery as a possible treatment for lymphedema? My boyfriend mentioned that his nephew had an enlarged scrotum from his sister kicking him, which surgery was performed.  Tonight, a friend ment Read More...


    Posted January 22, 2010 by Kathryn Krastin

    9 Comments 2,241 Views

    What do y'all think about creating a You Tube video where we have folks taking a cam picture of each of us dancing in our surroundings--and, then someone editing these together to form one You Tube video to the tune Read More...


    Posted January 22, 2010 by Kathryn Krastin

    7 Comments 2,727 Views

    Just sent out my first gift message to Bernadette, which read: Thank you soooo very much. I'm a bit new to the community, but I've hit the ground floor running. lol.... Give me a cause, I'll cause you to Read More...

  • OPEN LTR TO CONGRESS - NLN SAMPLE (Cancer related only?)

    Posted January 22, 2010 by Kathryn Krastin

    5 Comments 3,422 Views

    Below is a sample open letter to Congress; however, it seems to focus on cancer related lymphedema --- any information to add for non-cancer related lymphedema???  Please post responses.     Medicare Read More...


    Posted January 22, 2010 by Kathryn Krastin

    10 Comments 2,473 Views

    In running across sample letters for writing to the Governor for an awareness day, NLN has posted on their webpage the following sample letter for even just awareness within Congress.  Thought, if you are in the wri Read More...

  • Lymphatic Massages

    Posted January 22, 2010 by Kathryn Krastin

    11 Comments 2,929 Views

    When we end up going to physical therapy (especially as a result of needing wound care for our lymphedema), we are taught how to do self manual lymphedema drainage massage techniques; however, they are never seeming as e Read More...


    Posted January 21, 2010 by Kathryn Krastin

    6 Comments 2,012 Views

    After the launch date of REAL LIFE RADIO NETWORK (February 15th), my show on Saturdays (titled as above), from 9:00a-10:30a CST, will be focused on survivors -- primarily of domestic violence issues; however, I am consid Read More...

  • Lymphedema Awareness Day

    Posted January 17, 2010 by Kathryn Krastin

    13 Comments 3,066 Views

    Has anyone tried to get a Lymphedema Awareness Day established by the Governor of their State?  Oftentimes, they will proclaim an Awareness Day, which is recorded into the legislative books.  With this being an Read More...

  • Current Frustrations

    Posted January 17, 2010 by Kathryn Krastin

    2 Comments 2,074 Views

    I have been getting frustrated at times with the hurdles that are sometimes placed in front of us -- even by the very doctors that are supposed to be advocating for us. (Lately, I needed to replace the Juxtafit garmen Read More...

  • New Treatment for Lymphedema Including Acupuncture

    Posted December 4, 2009 by Terry Cawley

    13 Comments 4,920 Views

    I have a success story to share regarding my treatments program for secondary lymphedema brought on by an infection. I started over two years ago with the MLD and compression wraps with a therapist. I then began my own w Read More...

  • mammograms

    Posted November 18, 2009 by Jennifer Hovatter

    5 Comments 2,222 Views

    Did everyone see where they are telling people not to have mammograms until they are in their 50's?  We need to stand up and say something.   Just think-if we have our mammograms and prevent and or de Read More...

  • Lymphedema with Radiation Induced Brachial Plexopathy

    Posted November 13, 2009 by Connie Earl

    4 Comments 3,288 Views

    I find myself in a new community, with a message to share. I have recently celebrated my 10th anniversary of survival of stage 4 IDC breast cancer.  I began developing mild lymphedema in my left arm about two years Read More...

  • Donning devices

    Posted October 11, 2009 by Karen Reusch

    7 Comments 2,594 Views

    What do people recommend as the easiest donning devices for lower extremity compression garments when a person has upper extremity and hand weakness and has limited fine motor coordination.

  • All american lymphedema walk

    Posted September 14, 2009 by Jennifer Hovatter

    10 Comments 2,818 Views

    Can everyone please help get an all american Lymphedema walk  established-all american-we need to send letters to every governor in the us requesting for this walk that will be every year. I would like for it to be Read More...

  • 501 c 3-non proffitt status for the Thomas Hovatter Lymphedema Foundation

    Posted September 12, 2009 by Jennifer Hovatter

    1 Comment 3,360 Views

    Hi, does anyone know how  I  can get help setting up 501 c 3 for my husband's lymphedema foundation?  We really need to get this done so we can do more fundraisers and interviews. Can someone give m Read More...

  • Chat Session

    Posted August 29, 2009 by Jennifer Hovatter

    4 Comments 2,204 Views

    Hi everyone, Mike Bruns and I(Jennifer Hovatter) are going to start a chat session and want to invite everyone to join. It is a much needed event. Please join and chat with us, let me- as a lymphedema advocate Read More...

  • Weigiht Lifting and Lymphedema

    Posted August 19, 2009 by Nicole Major

    10 Comments 2,542 Views

    Anyone have any comments on this new study that has hit the news and the NEJM?

  • North Carolina House Bill 535 Health Insurance Coverage/Lymphedema

    Posted July 19, 2009 by Jan McKelvey

    9 Comments 2,063 Views

    North Carolina House Bill 535 Health Insurance Coverage/Lymphedema was filed in the House on March 11, 2009.  It has now passed the 2nd & 3rd reading in the North Carolina Senate, and was ratified by both houses Read More...

  • Tired of fighting ith insurance.

    Posted July 13, 2009 by Diana Wahl

    8 Comments 1,940 Views

    Hi, I was diagnosed on 2005 with brast cancer.  I developed lymphodema 1 year later.  Ihave been through therapy 2 times now.  Someone suggested the flexi touch.I had a demo and it really worked.It is to g Read More...

  • living with lymphedema

    Posted June 29, 2009 by Sherie Bante

    4 Comments 2,058 Views

    I have been living with lymphedema for 30 year in my right leg and just last year , lymphedema started in my left leg. i have been going to wound care now for 3 months becasue of the wounds on  both legs are bad,

  • Abdominal LE

    Posted June 23, 2009 by Laura Voss

    13 Comments 2,929 Views

    Question... I have a patient that is stage 4 Breast Cancer.  She is currently in chemo and radiation, and has had a double mastectomy with axillary lymph node disection in both armpits.  She currently has Read More...

  • compression sleeve question

    Posted June 21, 2009 by Jennifer Metcalfe

    3 Comments 2,039 Views

    I have a silly question...  I wear a sleeve with either a glove or gauntlet.  I never know which is supposed to go over the other where they meet. ..sleeve over glove or glove over sleeve.   Does it m Read More...

  • Dreading Summer!

    Posted June 4, 2009 by Cheryl Drury

    5 Comments 2,672 Views

      I hate to face the coming of summer every year!  Everyone is out and about with cute little shorts, skirts and bathing suits on, and I feel totally self conscious because of how my legs and feet look!  Read More...

  • Turner's Syndrome

    Posted June 3, 2009 by Brandi French

    3 Comments 2,044 Views

      I was wondering if you have treated any peds? My sister babysits for a 3month old with Turner's Syndrome and I'm sure she has lymphedema since that is a possible sideffect.  She has a positive stemm Read More...

  • Question about blood draws

    Posted May 25, 2009 by Donna Gulick

    4 Comments 2,618 Views

    Recently saw a patient for a consultation regarding prevention of developing lymphedema.  She is 2 weeks s/p bilateral mastectomy.  What is her best option for having blood drawn in the future?


    Posted May 19, 2009 by Jo Myers

    7 Comments 2,439 Views

     HOW DO I FIND A massage therapist with lymphatic therapy training.  I live north of Houston, TX. Thanks, Jo Myers  

  • Help!

    Posted May 16, 2009 by Jennifer Metcalfe

    7 Comments 1,917 Views

    Hi all,  I have lymphedema of the left arm/hand due to breast cancer surgery.  I have had swelling for 6 years and can't seem to get it under controll.  I know it is because I'm horrible at doing Read More...

  • Exhausted With Lymphadeema

    Posted May 15, 2009 by Pat Nave

    5 Comments 2,082 Views

    Just wondering if anyone else out there is exhausted from constantly dealing with Lymmphadeema. I am doing a good job at  keeping up with treatment, but , I get fustrated trying to keep up. Besides the expense , I m Read More...

  • managing LE

    Posted May 15, 2009 by Susan Hughes

    9 Comments 1,930 Views

     I have LE in my left lower leg , the result of 7 surgeries on my left knee since 2004.  My right leg did also swell, but it resolved quickly.  I went to a fabulous therapist, who worked with massage and w Read More...

  • Call Me Bigfoot!

    Posted May 15, 2009 by Barbara Pilvin

    2 Comments 9,398 Views

    I'm terrific at thinking up titles; sometimes it's hard to think up the text to go with one, but my titles are fantastic.  The one above would actually apply even if I didn't have lymphedema, since my Read More...


    Posted May 13, 2009 by Kathy Bates

    2 Comments 2,078 Views

    Of interest? Http:// If you have questions please contact me through the website contact form as I may not check this forum daily. God Bless, Kathy

  • Supplies

    Posted April 29, 2009 by Karen Berry

    3 Comments 2,113 Views

    I need assistance finding medical supplies for my wounds - I can't find any Aquacel wound dressings except to buy by the case which I definitely can't afford - I still have one left - can anyone help??? &# Read More...

  • LE and pregnancy?

    Posted April 28, 2009 by Jennifer Kramer

    2 Comments 2,448 Views

    Hi Everyone, I have primary LE in both legs and have since childhood. I didn't have any second opinions on treatment of my LE until I was 33 and pregnant and anticipating a serious increase in my swelling. I actual Read More...

  • No help!

    Posted April 23, 2009 by Karen Berry

    6 Comments 2,182 Views

    I have had lymphedema in my legs for over two years now and can't walk- it was almost a year before I knew what it was!   Now I have cellulitis and two open wounds on top of that!   I have no hea Read More...

  • My Story and questions

    Posted April 22, 2009 by Sylvia Shaw

    10 Comments 5,612 Views

    Hi Everyone, I am new to this community, too. I did notice slight swelling in my feet and lower legs on and off for awhile before a flare up one day. I was 33 when one summer day just after a grueling 4th of July weeke Read More...

  • Introduction

    Posted April 19, 2009 by Pat O'Connor

    2 Comments 2,634 Views

    I was born with lymphdema in 1952 and have actually traced it in my family through the late 1800's.  There are a number of us (siblings, cousins) that have it. In 1995 I was diagnosed with mixed B-cell lymphom Read More...

  • new to the community

    Posted April 15, 2009 by Natalie Algeyer

    7 Comments 1,695 Views

    Well I am so glad my husband found this site. I have lymphedema of the R leg with flair ups in my R arm.  I have had it for about 5 years. Reason unknown. It has really changed my life. I have kids who are active a Read More...

  • Hello to all!

    Posted April 14, 2009 by Kenya Clark

    7 Comments 2,289 Views

    I just want to say hello to all in the community and that I am so glad that there is a forum for us. Kudos to the genius who saw a need and thought of us. :) Now about me... I'm 26 years old and I have primary lym Read More...

  • Burning Questions

    Posted April 14, 2009 by Ann Ketter

    5 Comments 2,033 Views

    Hello everyone.  I am so pleased to see this community created.  So much info I've gotten so far has been in the category of ... well, I would think that ...  So here are my burning yet unanswered to Read More...

  • Controlling Lymphedema by message

    Posted April 14, 2009 by Carol Mooney

    3 Comments 2,179 Views

    Lymphedema of arm/chest due to removal of lymph nodes under arm was controlled by message of the affected area. Message specialist under direction of Lymphedema specialist MD. Message was taught to husband who does it tw Read More...


    Posted April 14, 2009 by Linda Malmberg

    6 Comments 3,041 Views

    Hi everybody!  I'm so excited about this new website that Steve has made available to us.  I think this can be a great resource for networking and sharing information between both patients and therapists.& Read More...

  • Hi Everyone

    Posted April 13, 2009 by Charlene Schroeder

    6 Comments 1,729 Views

    I am 42 years old and have been living with primary lymphedema in my lower extremities since I was about 12 or 13 years old. I do what I can to keep it under control and I keep a positive attitude about it...there c Read More...

  • New to the site

    Posted April 13, 2009 by Patrice Harman

    5 Comments 2,285 Views

    Hi everyone!  I'm new to this community, although I'm not new to lymphedema.  I am a breast cancer survivor of almost 10 years!  In the spring of 2000, while having radiation treatment, I compl Read More...

  • Welcome to Lymphedema!

    Posted February 23, 2009 by Steve Norton

    12 Comments 4,346 Views

      Dear Member Greetings to our growing community of lymphedema-focused professionals, patients, and industry partners! It is with great excitement that we launch this most unique and timely Read More...