World Lymphoedema day

It is that time of year again when we build awareness of Lymphoedema …. March 6th is world Lymphoedema day .. Lets celebrate as a community and support each other while we share with others … This is the time to educate others on this disease that is so misunderstood.. Let March be an important time where we share our stories, let us show the world what it means to have lymphoedema …


Introducing My Lymph!

Thanks Sarah for this great site you have put together …fantastic info and support for all those with Lymphoedema …

Lymphosaurus Rex

This post has been taken from where it was originally published.

Heya! My name is Sarah and I’m a Lymphoholic. Yes, I admit I have a huge problem with lymphedema. The problem is not that I have the condition myself… It’s that I love talking about it and learning all there is to know! You could say I’m slightly obsessed with lymphedema and that’s fine- because you are totally correct!

The inspiration to create My Lymph came following the success of our positive people project, Chronically Motivated. The response was overwhelming and showed me how strong and courageous people were who lived with this condition. We all had the motivation to kick it in the butt and live our best lives with lymphedema… but we were all kind of clueless on how to do this!

This struck a personal note with me and made me think…

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A pill for lymphedema? Talking ubenimex’s potential with Dr. Quan of Eiger BioPharmaceuticals

How exciting would it be if we could just take a pill to get rid of our Lymphedema… great research ..thanks Alexa for keeping us up to date

The Lymphie Life

Living with lymphedema can be a real pill — but what if it could be treated with one?

Recent studies indicate it’s possible, and may even be a reality sooner than we think thanks to clinical trials of a drug called ubenimex.

Last summer I wrote about the ubenimex trials, which at the time of writing had just kicked off by dosing their first patient. The news generated a huge response from the lymphedema community — one of hope, excitement, and lots of curiosity — so I’m back with an update!

Photo courtesy Dr. Quan.

I recently had the incredible opportunity to speak with Dr. Joanne Quan, Chief Medical Officer at Eiger BioPharmaceuticals, a biopharmaceutical company focused on the research, development, and commercialization of therapies for orphan diseases; they are also sponsoring the ubenimex clinical trial.

Dr. Quan and I talked about the ubenimex trial, the Stanford…

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Four year on….

imageToday is world Lymphedema day….March 6th… four years ago I started this blog to write about my Lymph node transfer surgery, as I could find nothing from a patients point of view. Four years later there are Facebook groups, websites and people on Instagram sharing there stories of surgery to help lymphedema. It is no longer seen as experimental and I believe there are improvements in results all the time. Lately some surgeons are using various combination of Lymph node transfer, (LNT) lymphatic liposuction, Suction assisted protein lipectomy (SAPL) and Lymphatic vascular anastomosis (LVA)… we are still waiting to see long-term results of this combination but it is exciting news.

I am still waiting for someone to be able to throw away their compression after surgery but for sure it helps the limb. In my case no more infections, my leg remains soft and responds very well to compression plus I have days with no compression and it stays ok… Due to other health issues I was unable to have more surgery plus due to these health issues I am now a paraplegic and use a wheelchair, this is not helpful when you have lymphedema. I feel sure that if I was still able to walk, use a pool and exercise my results from surgery would be even better.

We are also seeing more research into various other treatments for Lymphedema such as medications and artificial lymph vessels. We need as much research as possible so that we can see advances in a cure for Lymphedema. Lets hope that in the next four years we can see this happen…We need a cure for Lymphedema ….

Although I do not post very often on this site anymore it is always monitored and questions answered.. I love to share people’s stories so we may help each other…


Copyright © 2013-2017 by Helensamia. All rights Reserved.

Feel free to share with others. It can be distributed via social media, reblogged or added to websites. Please do not change the original content and provide appropriate credit by including the author’s name and a link to this blog. Thanks

Update from Cindy..

Just received this update from Cindy who is two years post Lymph node transfer with Dr Graznow …going well but always have to be vigilant for any issues … it is about gauging what works best … however not having to wear compression all the time is great… LNT will continue to improve too ..

“This is long overdue. December 11, 2016 was my 2 year anniversary for the VLNT. I am pleased to report that my leg size continued to stay small and I spent a lot of time out of my garment. I was beginning to hope the Lymphedema was gone. All that changed when I put a pair of socks on to wear with my boots. The socks were crew socks so the elastic was around my calf. While at work I decided to check and see how my leg was handling the elastic. I was horrified to see the swelling (and pitting) right above the sock. I ran home during lunch and put my garment on. Next day it looked good and I continued to not wear my day garment. Overtime, I realized I could feel my calf getting bigger during the day. It was slowly getting larger and heavier. I am back wearing my day garment, using the Jovi at night and receiving MLD twice a week. My leg looks and feels great again. I’m fairly certain I will be able to go without my day garment again. I don’t want to rush it. I waited an entire year post VLNT to experiment with not wearing my garment. Think I will give it a month before I try again. I’m grateful for all those days without my garment. I now realize I can have nothing on my leg that restricts circulation.

Wishing everyone a happy and HEALTHY 2017!!” From Cindy

Please everyone remember that March 6th is world Lymphedema Day


Copyright © 2013-2017 by Helensamia. All rights Reserved.

Feel free to share with others. It can be distributed via social media, reblogged or added to websites. Please do not change the original content and provide appropriate credit by including the author’s name and a link to this blog. Thanks

Lymphedema and Compression

Sharing Karens story and her latest update as to how well she is going with the treatment of the Lymphedema… There was a time when she could not wear compression garments due to the size and shape of her legs… However Karen is now going really well it is so good to see.. Thank you Karen as always for sharing your story.. It shows that there is hope for everyone with Lymphedema. Take care


I am not a person who likes to make absolute statements. I have always believed that what works for one person with lymphedema will not always work with someone else with lymphedema. Every person is unique.

BUT I am now going to say that I now believe that compression garments or wraps is the key to living with lymphedema. I have primary lymphedema and I have lived all of my life with it (well officially  the lymphedema didn’t show until puberty) and I have had a lot of lymphedema pain for the last 25 years. In the last few months I was able to have treatment where I was wrapped with Coban wraps and my legs were finally to a shape where I could actually wear compression stockings. WooHoo!!! I have not had lymphedema pain since I started wearing my compression stockings (actually since I started being wrapped with the Coban…

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Lymphedema: a Name for 33 year’s worth of questions.

A great post about Primary Lymphedema and its diagnosis and treatment ..thanks Laura for sharing your experience so others may learn from it …

Expressions of Laura Ashley

This month, I began a journey that I never thought I was prepared for. Upon realizing that I was in my 30’s and having never really addressed why my legs always looked puffy or swollen, I thought I’d go to the doctor. I didn’t really know where to start, so I went to the foot doctor. As part of their intake session, they took an xray of my foot. When I met with the doctor, he looked at my foot movement, my walk and gait, and range of motion. But he said my bones were fine. Even my foot, which he said was not a “flat foot” but a type of flatter foot, was fine. But he said he thought I had lymphedema because of the swelling and that he’d refer me to a lymphedema specialist. I left with a prescription for low level compression wear and some online resources…

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imageFirst Patient Dosed in Secondary Lymphedema Study
Andrew Black
Published Online: Monday, Jul 25, 2016
30 700 5 4
Eiger BioPharmceuticals dosed the first patient in the Phase 2 Ultra Study of their drug Ubenimex in patients diagnosed with secondary lymphedema. The Ultra study is designed to assess the effectiveness of ubenimex blocking the production of Leukotriene B4 (LTB4).
Ultra Study
The study will evaluate the effects of ubenimex in patients with secondary lymphedema of the lower limb(s) who are optimized on physical therapies. The Ultra Study is a multi-center, randomized, double-blind, placebo-controlled Phase 2 trial assessing 40 patients that will be randomized to receive either 150 mg of ubenimex or placebo three times a day over 24 weeks.

Leukotriene B4 (LTB4) is a naturally-occurring inflammatory substance known to be elevated in both preclinical models of secondary lymphedema as well as human lymphedema disease. Elevated LTB4 causes tissue inflammation and impaired lymphatic function. Targeted pharmacologic inhibition of LTB4 promotes lymphatic repair and reverses lymphedema disease in treated animals.

Ubenimex is an oral, small-molecule inhibitor of leukotriene A4 hydrolase, which regulates the production of leukotriene B4 (LTB4), an inflammatory mediator implicated in PAH. LTB4 is produced from leukocytes in response to inflammatory mediators and is able to induce the adhesion and activation of leukocytes on the endothelium, allowing them to bind to and cross it into the tissue.

Ubenimex is also currently being evaluated in a Phase 2 study for the treatment of Pulmonary Arterial Hypertension (PAH).
Secondary Lymphedema
Secondary lymphedema usually develops as a result of a lymph vessel blockage or interruption that alters the flow of lymph through the lymphatic system and can develop from an infection, malignancy, surgery, scar tissue formation, trauma, radiation, or other cancer treatment Radiation therapy can damage otherwise healthy lymph nodes and vessels, and can cause scarring of the lymphatic vessels which leads to fibrosis and subsequently diminish lymphatic flow.


Always excited to see any research into treating and curing Lymphedema …

Thank You


March is drawing to a close and I would like to take the opportunity to thank everyone for making this the best Lymphedema Awareness month ever. For the first time we had World Lymphedema day, on March 6th, as everyone united to bring awareness to a disease that affects millions but is not well supported or understood.

imageBoth those with Primary and Secondary lymphedema stepped out of their comfort zones to tell their stories. What a variety of personal accounts have been shared across social media. The effect lymphedema has on people’s lives is different for each person. The severity is also different for everyone ranging from one limb to the whole body. Some people get many bouts of cellulitus and infections, others non. In some the swelling is very severe, in others manageable. The one thing that unites all Lymphedema sufferers is the need to care for their limbs 24/7 and the need for better financial, physical and mental support. The burden of care financially should not just fall to the patient, in which case many cannot afford the care that is needed.

imageBy bringing awareness we hope to educate people on the needs of those with Lymphedema. We hope to move governments to introduce legislation to cover more of the costs faced by those with lymphedema. We hope to encourage reasearch into this often misunderstood problem.

Thank you to every single person who  has been involved in building awareness of Lymphedema. The story writers, the bloggers, the Facebook pages and groups, those that shared on social media those that liked and read and talked about Lymphedema. Those who ran workshops and groups. To Kathy Bates for stepping out to be our spokes person. Everyone no matter how big or small has led to March 2016 being the best awareness month ever…

Well done all …


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Lymphedema Lilly brings Hope

This is the best news ever from Dr Marga re Lymph Node Transfer Surgery. At last it is no longer called Experimental and has become excepted surgery for Lymphedema … How exciting … This truly gives HOPE to those with Lymphedema .. This is the post from Lymphedema Lilly and Dr Marga …

This is a link to her FB page .
One of the most disheartening aspects of lymphedema is that it is commonly described as a deforming, progressive and chronic medical condition for which there is NO CURE. Lymphedema sufferers often relate reaching out to health care providers for treatment and meet only with a lack of knowledge of this disorder on the part of nurses, physicians and both occupational and physical therapists. This limited access to quality care or assistance results in chronic anxiety and depression for many as it robs patients of any kind of hope to combat the long-term complications and associated disabilities of this disorder.
Lymphedema Lilly was introduced by Dr. Marga F. Massey to help disseminate the most sophisticated treatment options available for the treatment of lymphedema currently available in the United States. This year is a hallmark as microsurgical lymphatic reconstruction has been accepted by the surgical community as a reproducible, effective and safe means to bring relief to patients suffering upper and lower extremity lymphedema. Major academic institutions have added lymphatic reconstruction to their educational missions for residents and fellows as well as in specialized post-graduate educational symposiums. The American Society of Plastic Surgeons now offers lymphatic reconstruction CME Instructional Courses for experienced Plastic Surgeons to learn more of these reconstructive procedures. The battles with insurance companies for coverage are less frequent. In short, patients now have HOPE as access to health care options is easier and more accepted as the standard of care by the medical community.
VLNTx is the most sophisticated form of microsurgical lymphatic reconstruction available today in the United States. Diseased areas of a patient’s lymphatic system are reconstructed using healthy lymphatic tissue including lymph nodes transferred from a remote location elsewhere in the body. Arterial and Venous blood vessels are reconnected using the intra-operative microscope as a means to ensure survival of the transferred lymph nodes in the zone of prior injury, hence the title “Vacularized”. All of Dr. Marga’s patients are enrolled in the oldest American prospective clinical trial addressing VLNTx for treatment of extremity lymphedema to ensure validation of the technique and to track long-term complications. Dr. Marga has more than 10 years of clinical experience in the field and is a Certified Lymphedema Therapist offering care for patients in 5 Centers throughout the US.
Lymphedema Lilly Trivia: It’s rumored that Lymphedema Lilly’s eyes and smile were designed with an attempt to artistically emulate Dr. Marga’s loving approach to being Happy while living with Lymphedema.
Till Next Time, Be Health and Happy!” Dr Marga Massey


Thank you to Dr Marga and all the other surgeons who have worked so hard to have this surgery excepted. Three years ago I was the first person in Australia to have this surgery for my lymphedema leg. I started this blog as there was  so little information and non at all from patients. In the last three years I have watched as things have changed, as surgery has improved, as insurance companies do not call it experimental….. All those who have Lymphedema now can have HOPE … One day there maybe a total cure… One thing is certain we are moving towards the light at the end if a very dark tunnel … Helen


Feel free to share with others. It can be distributed via social media, reblogged or added to websites. Please do not change the original content and provide appropriate credit by including the author’s name and a link to this blog. Thanks