• Sharing 25 Years of Experience as a Lymphedema Patient

    Posted January 25 by Cade Flin..

    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 my experience. If you can add to this feel free to message me (I love updates a...

  • 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 most men admire a woman with extremely large legs. I know its difficult to think a ...

  • Question

    Posted October 7, 2016 by Marge Naab

    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? I have been told that if lymph node stays the same or gets bigger they will have...

  • 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.

  • Bandaging post knee surgery for non lymphedema

    Posted October 10, 2015 by Mary Ann Sandoval Obadiah

    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't have lymphedema, but will shortly undergo ACL reconstructive surgery.  W...

  • 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 stating it is not medically necessary and experimental. Obviouslyshe is devastate...

  • 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 managment as when I started My docter will not give me more pills and wants to send me t...

  • LVA is Effective Treatment for Lymphedema

    Posted May 1, 2015 by Brenna M.

    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 improvement in my swelling!   Some Background: I'm 30 years old, I was diagnosed...

  • 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 was puzzled by the amount of pain running up my arm. Does anyone else have this p...

  • 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 compression in more than a year now and my left foot stays within a reasonable size, sh...

  • Kidney functions and lymphedema?

    Posted July 28, 2014 by Jim Miller

    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, daily Class IV garment wear, and good health. But now I find in the past 18 months...

  • A HINT to avoid one cold leg at night.

    Posted June 13, 2014 by Anne Rock

    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 pajamas (or sweats, Pilates pants or other) down the inside of the normal-sid...

  • Bandaging question

    Posted April 28, 2014 by Julie Deane

    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 them do with the patients? Do you teach them to bandage or MLD them?   Th...

  • 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 anyone have any experiences with one or both of these?

  • 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 important for you to develop the best procedures possible to apply for contracts effi...

  • 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 the time my port was full of calcification and every time when flush I got sick a...

  • 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 adult my weight has fluctuated from 400- 500lbs  I'm 6ft tall . Believe it or...

  • 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 you wear to keep your trunk compressed when you are at the pool but sitting out o...

  • 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 guessed it already its about my foot. I try to avoid it by wearing tennis shoes but I ...

  • 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 already done?

  • 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 and bad points of surgery I hope yo...

  • Lymph Node Transplants

    Posted May 7, 2013 by Helen Bonynge Blog about the surgical interventions for Lymphedema... Patients stories

  • Lymphedema Treatment Act Update:

    Posted March 26, 2013 by Jenny Sterner

    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 goal of all 50? You can read more about the teams at http://lymphedemat...

  • 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 bill has been referred, is working on preparations for reintroduction of the Lymp...

  • My lymphedema story

    Posted December 22, 2012 by Lympha Yogi

    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 lymphedema is in my left lower extremity, starting in my toes and ending right belo...

  • 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 little success from a lymphedema massage therapist the Flexitouch Lymphedema Syste...

  • Lymphedema Treatment Act Update--September 2012

    Posted August 31, 2012 by Jenny Sterner

    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 be officially added so I have no updated total for you.  Remember that persi...

  • night sleeve

    Posted August 17, 2012 by Mary Angel

    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 a try here.  

  • ads for sleeves

    Posted August 17, 2012 by Mary Angel

    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 lymphedema?--just saying.

  • lymphedema a speed bump

    Posted August 16, 2012 by Mary Angel

      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  fluid and such. Besides it gets a smile sideways and a guess if that is the ...

  • 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 muscle because it had gotten tight. She told me not to touch it or clean it and ...

  • 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 the ????? so that registered nurses can treat and bill insurance complanies for...

  • 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, just a small percentage of those receiving this Newsletter contacted their mem...

  • 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 - if you do not se...

  • 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 garnered 46 bipartisan cosponsors.   The bill gained the endorsement of the ...

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

    Posted October 22, 2011 by Jenny Sterner

      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.   The template letter has been temporarily changed to an invitation for...

  • Got Lymphedema? Get an active lifestyle

    Posted October 5, 2011 by Britt Desbien

    There’s good news for sufferers of lymphedema – you can live a healthy, active life! In fact, according to the article “Exercise for Lymphedema Benefits Supported by Studies” by Bonnie B. Lasinski, “exercise is an essential component of lymphedema treatment because the ...

  • For your soul !

    Posted October 1, 2011 by cosmina cocan

    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 jar was full and they was agreed it was. The professor then piked up a box pebbles...

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

    Posted September 2, 2011 by Jenny Sterner

      This year’s trip to DC will be Nov. 2–5, 2011.  Please visit our website for complete information -     Want to support our efforts in DC but can’t come in person?  Please con...

  • A little Profile Help, Please

    Posted August 6, 2011 by Mary Shoup

    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 to write your Representative and Senators if you ha...

  • 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 Congress through the website.   Please use the su...

  • Sleep Is Awesome!

    Posted July 7, 2011 by Drew Hendricks

  • Change management and Lymphedema

    Posted June 23, 2011 by Jim Miller

    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 ask myself, and frequently see similar questions on lymphedema web sites, "Why is ...

  • Had To Say It

    Posted June 17, 2011 by Michele E.

    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 lymphedema??  Yikes.  One of the comments made me think long and hard.When g...

  • Dating with lymphedema - 2

    Posted June 15, 2011 by Michele E.

    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 NOT pretty enough.   *I can never keep someone’s attention.  ...

  • Facts About Lung Cancer

    Posted June 13, 2011 by Drew Hendricks

  • LTA Update, June 1

    Posted June 10, 2011 by Jenny Sterner

    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, his office has been working with the professional bill writers of Legislative ...

  • Dating and Lymphedema

    Posted June 10, 2011 by Michele E.

    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 in actuality have had better success on it than meeting someone in a public area....

  • What gestures we make us women, sexy

    Posted June 10, 2011 by cosmina cocan

      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, sexy! Self-esteem is also called "invisible secret dress" Social interaction - ...

  • Common Running Injuries

    Posted June 8, 2011 by Drew Hendricks

  • 10 Interesting Facts About the Human Body

    Posted June 3, 2011 by Drew Hendricks

    Source: Today I found out

  • The Great Diet Comparison

    Posted May 23, 2011 by Drew Hendricks

  • Lymph node transfer

    Posted May 20, 2011 by Kari Stuart

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

  • Stop Smoking Facts

    Posted May 16, 2011 by Drew Hendricks

  • 16 Things You Didn't Know About Sleep

    Posted May 10, 2011 by Drew Hendricks

      -The record for the longest period without sleep is 18 days, 21 hours, 40 minutes during a rocking chair marathon. The record holder reported hallucinations, paranoia, blurred vision, slurred speech and memory and concentration lapses.- It's impossible to tell if someone is really awake wi...

  • 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?

  • The Skinny on Obesity in America

    Posted May 6, 2011 by Drew Hendricks

      "More people die in the United States of too much food than of too little." - John Kenneth Galbralth

  • 10 Things You (Probably) Won't Hear From Your Doctor

    Posted May 5, 2011 by Drew Hendricks

    With doctor's offices busier than ever, you're lucky if you get 20 minutes with your M.D. Which is why it's not surprising that even when it comes to your most vital organ, the advice you receive can sound somewhat boilerplate: Exercise regularly, watch your diet, don't smoke, and limit your drink...

  • looking for provider in area

    Posted May 4, 2011 by S K

    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 hip pop out due to swelling and weight) therefore i also need not only a facility ...

  • Health Care Reform Information

    Posted May 4, 2011 by Drew Hendricks

      View the full image: Click here

  • Truth About Fast Food

    Posted May 3, 2011 by Drew Hendricks

  • Drugged Culture

    Posted May 3, 2011 by Drew Hendricks

    The pharmaceutical industry spends a lot of money marketing their newest psychiatric drugs to Americans.  And we take a lot of them.  In fact, in 2009 alone, U.S. doctors wrote more psychiatric prescriptions than there are people in this country.  This is a look at 2009's 10 most pr...

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

    Posted May 1, 2011 by Jenny Sterner

    We are pleased to announce two wonderful additions to our website: we now have a Resources for Patients page, ( and a sampling of submissions to “My Lymphedema Story” can now be read on our Blog! (http://lym...

  • LymphedemaGirl

    Posted April 29, 2011 by Liz N

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

  • The Empowered E-Patient

    Posted April 27, 2011 by Drew Hendricks

  • Causes of Lymphedema

    Posted April 25, 2011 by Drew Hendricks

    The lymphatic system is a crucial to keeping a person healthy.  The lymphatic system transports protein-rich lymph fluid throughout the body while collecting bacteria, viruses, and waste products.  The lymphatic system carries this fluid and other substances through the lymph vessels, whic...

  • Becoming a Certified Lymphedema Therapist

    Posted April 18, 2011 by Drew Hendricks

    When the body’s lymphatic system is damaged the primary cause is most often radiation and or surgery for cancer therapy. Other causes may include significant direct trauma and serious skin or lymph node infection. The result is a decrease in the lymphatic systems ability to effectively drain l...

  • Lymphedema Treatment Act

    Posted April 16, 2011 by Jenny Sterner

    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 fitter, support group, family and friends, church, etc.  Just contact us at in...

  • What Is Lymphedema & How To Treat It

    Posted April 13, 2011 by Drew Hendricks

    Lymphedema is a disease caused by insufficient uptake and transport of lymphatic fluid within the networks of specialized lymphatic vessels and nodes. This disorder can be caused by genetic inheritance and (or) due to injury. With that in mind, it will cause the lymph fluid to stagnate inside of the...

  • Lymphedema Treatment Act update

    Posted April 2, 2011 by Jenny Sterner

       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 future reference, icons linking to those accounts can be found in the lower right ...

  • Facts About Smoking

    Posted March 11, 2011 by Drew Hendricks

    People who have lymphedema must avoid smoking at all costs as smoking narrows the small blood vessels, lessening the flow of fluids in the arm.

  • Cancer: Global Killer

    Posted March 8, 2011 by Drew Hendricks

  • 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 bar: Thanks, Alexa

  • 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 his work on HR 4662 this year, and his pledge to reintroduce the bill next year, ...

  • 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 yesterday was Congress’s first day back to work and we gained four new cospons...

  • 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 year?”  Rather than answer one by one, I will address this to everyon...

  • 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 instead) and Vic Snyder.  Of the remaining 50, five were not re-elected.&nbs...

  • 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 for us bandaging-challenged?

  • 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 hadn't thought about until last night, and I'm sure it affects others: I have in...

  • "Share Your Story" Campaign

    Posted September 19, 2010 by Jenny Sterner

    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 am thrilled to be able to attend the National Lymphedema Conference taking place ...

  • HR 4662 and the American Cancer Society

    Posted September 3, 2010 by Jenny Sterner

    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.;

  • Farrow Wraps

    Posted August 23, 2010 by Dale Rutala

    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 wondered if anyone had any knowledge or opinions on this product. The website i...

  • HR 4662 - Lymphedema Cost Relief Bill on Capitol Hill

    Posted July 2, 2010 by Kathryn Krastin

    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 done. At this moment, we have 33 co-sponsors for the bill.... and still growing i...

  • new to this site

    Posted April 26, 2010 by Kathy B

    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.  I prefer to remain as annoymous as possible for now anyway. I have primary ...

  • Emotional Well-being

    Posted April 23, 2010 by Kathryn Krastin

    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 patient, as well as family/friends/caregivers of the lymphedema patient.  I ...

  • Employer is Changing Insurance Companies...

    Posted April 15, 2010 by Kathryn Krastin

     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 considering changing to Aetna Insurance. Anyone with any pros/cons about Aetna...

  • National Lymphedema Awareness Day - Radio Show

    Posted March 6, 2010 by Kathryn Krastin

     In case you missed the show, you can still hear the show at   Please pass this  link to others to bring about a greater awareness of lymphedema to others, as well as discussion about the HR ...

  • How can this site serve you better?

    Posted February 11, 2010 by Steve Norton

     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 wanted to ask if you would value us  adding or subtracting anything from Lymp...


    Posted February 6, 2010 by Kathryn Krastin

     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), where else can I get a custom JUXTAFIT ordered under my insurance plan?? What vendo...

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

    Posted January 30, 2010 by Kathryn Krastin

     ... 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 inspiration....

  • Surgeries?

    Posted January 26, 2010 by Kathryn Krastin

    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 mentioned that she has had several surgeries to combat the problem. Just curious......


    Posted January 22, 2010 by Kathryn Krastin

    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 of something about "can dance" and/or "can live" and posting it as an awareness...


    Posted January 22, 2010 by Kathryn Krastin

    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 be aware! :P After reading what I wrote, I just realized that "Give me a cause,...

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

    Posted January 22, 2010 by Kathryn Krastin

    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 and other health care insurersAmerican doctors have not been schooled in the &#...


    Posted January 22, 2010 by Kathryn Krastin

    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 writing mood, you might want to follow this letter to your Senators and House Repre...

  • Lymphatic Massages

    Posted January 22, 2010 by Kathryn Krastin

    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 effective as the physical therapist doing them. In the last year or so, with the...


    Posted January 21, 2010 by Kathryn Krastin

    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 considering to have survivors from other traumatic events.   Would you, or someo...

  • Lymphedema Awareness Day

    Posted January 17, 2010 by Kathryn Krastin

    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 election year in Texas for the Governor race, it might be a great time to pursu...

  • Current Frustrations

    Posted January 17, 2010 by Kathryn Krastin

    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 garments that are over a year old and splitting from the bottom, but she refused becau...

  • New Treatment for Lymphedema Including Acupuncture

    Posted December 4, 2009 by Terry Cawley

    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 work with exercises, hot and cold water and then started acupunture. I am happy t...

  • mammograms

    Posted November 18, 2009 by Jennifer Hovatter

    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 detect early and treat, we are knocking out lymphedema in that area. A majority of...

  • Lymphedema with Radiation Induced Brachial Plexopathy

    Posted November 13, 2009 by Connie Earl

    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 after finishing my treatment.  I had no problems controlling it.  Then...

  • Donning devices

    Posted October 11, 2009 by Karen Reusch

    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

    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 on June 18th. It would be for everyone having anything to do with lymphedema and...

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

    Posted September 12, 2009 by Jennifer Hovatter

    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 me advice about who to talk to and what we need to do? I have talked to an a...

  • Chat Session

    Posted August 29, 2009 by Jennifer Hovatter

    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 -know what you need. Mike is trying to pick a time and day to help everyone out ...

  • Weigiht Lifting and Lymphedema

    Posted August 19, 2009 by Nicole Major

    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

    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 on July 9, 2009.  House Bill 535 supports insurance reimbursement for eval...

  • Tired of fighting ith insurance.

    Posted July 13, 2009 by Diana Wahl

    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 gard to give yourself areally goodmassage.  My insurance will not cover it a...

  • living with lymphedema

    Posted June 29, 2009 by Sherie Bante

    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

    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 no edema in her arms, but her abdomen is full and hard.  I treated her for...

  • compression sleeve question

    Posted June 21, 2009 by Jennifer Metcalfe

    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 matter?    Thank you!

  • Dreading Summer!

    Posted June 4, 2009 by Cheryl Drury

      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!  Everyone gets to wear cute summer sandals and flats, and I have to wear my sneak...

  • Turner's Syndrome

    Posted June 3, 2009 by Brandi French

      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 stemmer sign bilateraly in lower extremities, no pitting, her little feet are just ha...

  • Question about blood draws

    Posted May 25, 2009 by Donna Gulick

    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

     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

    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 the things I am supposed to do to manage it.  I'm interested in findi...

  • Exhausted With Lymphadeema

    Posted May 15, 2009 by Pat Nave

    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 meen the work !     ??  

  • managing LE

    Posted May 15, 2009 by Susan Hughes

     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 wrapping over a year, and the horrible edema came down,  Now I wear the comp...

  • Call Me Bigfoot!

    Posted May 15, 2009 by Barbara Pilvin

    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 shoe size is a 9 1/2 or 10, depending on the style, and I'm no taller than...


    Posted May 13, 2009 by Kathy Bates

    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

    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???   I could use some help!!!    

  • LE and pregnancy?

    Posted April 28, 2009 by Jennifer Kramer

    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 actually managed the pregnancy fairly well with compression garments and manual lymph ...

  • No help!

    Posted April 23, 2009 by Karen Berry

    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 health insurance and I am told that I have too much money (ha ha what a joke) for m...

  • My Story and questions

    Posted April 22, 2009 by Sylvia Shaw

    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 weekend of cooking etc. I noticed my lower left leg had swelled to probably 2x i...

  • Introduction

    Posted April 19, 2009 by Pat O'Connor

    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 lymphoma and in 2000 with lymphoplasmacytic lymphoma.  I am also the founder of ...

  • new to the community

    Posted April 15, 2009 by Natalie Algeyer

    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 family that is active and at times I just can't be. I can't walk as l...

  • Hello to all!

    Posted April 14, 2009 by Kenya Clark

    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 lymphedema. I began noticing changings in my feet, ankles, and lower leg when I tur...

  • Burning Questions

    Posted April 14, 2009 by Ann Ketter

    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 my satisfaction questions in the hope that some of you might know something or h...

  • Controlling Lymphedema by message

    Posted April 14, 2009 by Carol Mooney

    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 twice a week and Lymphedema is under control. 


    Posted April 14, 2009 by Linda Malmberg

    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.  I wanted to write a little introduction about my own personal experience w...

  • Hi Everyone

    Posted April 13, 2009 by Charlene Schroeder

    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 could be worse things I could have.  Don't get me wrong...I hate it, it...

  • New to the site

    Posted April 13, 2009 by Patrice Harman

    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 complained to my radiologist's nurse about swelling in my right arm and hand.&...

  • Welcome to Lymphedema!

    Posted February 23, 2009 by Steve Norton

      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 website with the aim of uniting us all in one destination where we can connect,...