Invisible illness … Lymphedema

This week has been Invisible Illness week. I thought that many with Lymphedema would fall into this category. Even if people notice that one limb is larger than another they have no idea the impact Lymphedema has on everyday life. Many of us put on long skirts,loose trousers or long sleeves and a big smile on our faces, hiding the effort it took to look this good!! There are also many with Lymphedema who experience pain and when cellulitis hits this can impact our plans and social engagements.. Those with Invisible Illnesses often do not get the support or understanding they need. We all need to speak out and share our stories to bring understanding to this little known illness.. Lets make lymphedema less invisible. #Lymphedema


The SCAR Project… Breast Cancer is not Pink!


To day I went to the SCAR Project exhibition in Sydney and met the photographer David Jay.  I was able to chat with him about the exhibition.

I have seen the pictures online of the scars carried by women after Breast Cancer treatment, but to see them full size and read each story will soon tell you that Breast cancer is NOT PINK!! The women are aged 17-35 years old and some have died since taking part in this project. In the past year I have learnt a great deal about breast cancer from reading blogs, hearing personal stories of treatment and on going metastatic Breast Cancer. If you ever have the chance to see this exhibition I urge you to go. You will leave with a better understanding of why Pink makes so many upset and gives the wrong impression of Breast Cancer.

Link to images


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It’s Invisible Illness Awareness Week!


Thanks for this i am renlogging as many live with an invisible illness Including Lymphedema.

Originally posted on Heart Sisters:

Dearest heart sisters,

If you live with an invisible illness (as almost all heart patients do), this is your week, no matter what your diagnosis.  I encourage you to visit the Invisible Illness Week site, all about those of us living with serious health conditions that nobody else can see. It’s an annual educational campaign about how often illness is utterly invisible to others, how to be sensitive to those living with these challenges, and how to learn from their unique experiences.

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Lipedema Center opens September 2, 2014 at Mount Sinai Beth Israel, Friedman Center for Lymphedema Research & Treatment in New York City


Reblogging this as great news for those with lipedema and lymphedema living in the US… No more need to travel to Europe for the lymph sparing liposuction..

Originally posted on Lipedema Simplified BLOG:

Drs Stutz & Smith

Dr Josef Stutz & Dr Mark Smith – Germany March 2014

Dr. Mark Smith, Chief of Plastic Surgery at Mount Sinai Beth Israel in New York City opens the Lipedema Center, a part of the Friedman Center for Lymphedema Research & Treatment, offering medically reconstructive lymph sparing liposuction for lipedema on September 2, 2014. Dr. Josef Stutz, one of the top expert surgeons in lipedema from Germany, is visiting and assisting in bringing this treatment to the USA.

Dr. Smith is also Director of the newly established Gerald J. and Dorothy R. Friedman Center for Lymphedema Research & Treatment. In addition to treatment, the Center focuses on research in the areas of lymphedema, lipedema and the underlying fat metabolism that effects both conditions.

Dr. Smith has received numerous Patients’ Choice Awards, been included in Castle Connolly’s list of Top Doctors in Plastic Surgery and New York Magazine’s Best Doctors List…

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Brooklyn Bridge walk with The Lymphatic Education and Research Network

Walking the Brooklyn Bridge

Walking the Brooklyn Bridge

I was invited by the Lymphatic Education and Research Network to write a guest post on the importance of education and research for Lymphedema and the funds that are needed  to support their goals. On September 14th there will be a sponsored walk across the Brooklyn Bridge which is hoping to raise $60,000.

This is a link to my post…..

This is a link to more information about the day and how you can help raise much-needed funds…


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Help to guide the growth of lymphatic channels

I am always so excited with any new research to help Lymphoedema, even if I find it difficult to understand it is truly wonderful to see!!! This article was sent to me about “artificial” tissue that can be used during a Lymph node transfer to help in the development of Lymphatic Channels. It has been tested by Dr Corrine Becker and maybe available for use in 2015. “We anticipate that BioBridge will initially be used as an adjunct to Vascularized Lymph Node Transfer, an existing surgical procedure used for treating lymphedema. Our expectation is that BioBridge will help improve the outcome of this procedure. We are working closely with Dr. Corinne Becker, who pioneered this surgical procedure.” Quote from Greg King

Interview with Greg King, COO of Fibralign, Winner of 2014 MedTech Innovator

by JUSTIN BARAD on Jul 17, 2014 • 3:31 pm

Fibralign, a startup medical device company, just took home the grand prize in the 2014 MedTech Innovator competition, winning over 267 other startups. Their product, Biobridge, is a possible cure for secondary lymphedema, a debilitating disease with few available treatment options. Secondary lymphedema describes a condition in which the lymph system, which is responsible for removing extracellular fluid, is disrupted, resulting in the accumulation of extracellular fluid. This can lead to swelling in the extremities, which can cause significant discomfort and is cosmetically unappealing. This condition is most commonly associated with breast cancer patients who sometimes must undergo aggressive lymph node dissections in the armpit in order to stage their cancer, but it can happen in any condition in which the lymph system has been disrupted.



The Biobridge is an implant that has been shown to be able to guide the growth of new lymph channels. This technology can be used as an adjunct to existing treatments for the condition to hopefully improve outcomes.

The product itself is a collagen scaffold with very unique properties. “Scaffold” is a term used in tissue engineering that describes a three-dimensional material that encourages cells to attach and grow along its microscopic structure. While collagen scaffolds are not particularly unique, the Biobridge uses a novel fabrication method that gives it a distinctive three-dimensional structure that is very similar to collagen structures found within the body itself.

We had a chance to sit down with Greg King, the COO of Fibralign, to ask him some questions about this very exciting technology.

Justin Barad, Medgadget: Can you discuss the development of your technology? How did it start and when did you start seeing its potential?

Greg King: Our founders had a “penicillin moment” working in a Stanford Lab when they found that previously developed technology for working with liquid crystal materials used in the flat panel display industry could be applied to several biomaterials including collagen in a liquid crystal state to form 3D scaffolds. When they saw the resulting structure in the AFM image shown below they recognized that they had a breakthrough discovery. The image was like the skin scaffold of a newborn, with bundles of highly aligned collagen fibrils. As far as we know, this was never produced before in a lab. They were able to take collagen, a material commonly used for the past 30 years in various cosmetic and surgical applications, and fabricate scaffolds that mimicked different types of human tissue at the micro structural level. They started working with different research groups on a wide range of high-value tissue applications and used this experience to develop the core technology. They determined rather quickly that this was a fundamental technology that offered a large design space for addressing application requirements.

Medgadget: Can you tell us a little bit about when and how your company was founded?

Greg King: The company was founded in 2007 by Michael Paukshto, David McMurtry, Yuri Bobrov, George Martin and Eric Sabelman. They early years were lean, surviving primarily on sweat equity and some modest angel funding. During this time, the team developed its core technology, fabricated initial prototypes and secured an IP position and developed the manufacturing approach for scaling commercially. At the end of 2012, the Company made a business decision to focus on lymphedema as the initial product, expanded the core team and then moved from an incubator to a dedicated lab space with a cleanroom to support this development effort. Fibralign also benefited from grants from the DoD and NSF to support a large animal study and develop production tools for making its initial product. Can you tell us a little bit more exactly how BioBridge is used to treat secondary lymphedema? What results have you had so far in your animal studies?Secondary lymphedema can occur when the body’s lymphatic system is compromised from a trauma. In western countries this most commonly occurs after aggressive cancer treatments, involving surgery and radiation therapy, but it can also occur from infections and other injuries. This can disrupt the flow of lymphatic fluid in the affected limb that leads to swelling, great discomfort and serious infections.BioBridge is a bundle of small collagen fibrils aligned in one direction. It is made from medical-grade collagen and has been designed to support and repair the diseased tissue area, allowing new lymphatic vessels can form in the direction of BioBridge and restore function.In our successfully completed large animal study, we were able to show that new lymphatic vessels formed in diseased areas and about a 60% reduction in accumulated fluid only three months after BioBridge implantation. This compared to the control group that did not get BioBridge and showed no improvement.

Medgadget: What kind of effect will winning Medtech Innovator have on your company?

Greg King: We hope it helps attract attention needed for Fibralign to address this opportunity, providing visibility to investors, stakeholders and the broader community. We need to build awareness of what we’re doing to help treat this horrible and neglected disease, which impacts millions of people and currently has no cure.

Medgadget: Do you have any rough estimate when your product might come to market?

Greg King: We expect to have product in the market in 2015

Medgadget: What sort of clinical applications to you envision for the near future?

Greg King: We anticipate that BioBridge will initially be used as an adjunct to Vascularized Lymph Node Transfer, an existing surgical procedure used for treating lymphedema. Our expectation is that BioBridge will help improve the outcome of this procedure. We are working closely with Dr. Corinne Becker, who pioneered this surgical procedure.

Medgadget: Do you have any advice for our readers, many of whom are aspiring medical innovators and entrepreneurs?

Greg King: Pick something you’re passionate about because it will consume you and require tremendous energy to get anywhere. So make sure you like what you’re doing. Also get out and talk to your expected customers and test your hypothesis and product plans as early and often as you can. It sounds cliché, but this for some reason isn’t done enough in startups and in biotech in particular. Go out and validate your market opportunity before you commit effort and resources!

Greg King

Greg King

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Sue… 16 months post LNT

From Sue
“I went to my lymphedema therapist last night to have my leg remeasured. I am not 16 months post lymph node transfer surgery. My leg has continued to decrease in all areas, down about 1-1/2 inches in my thigh and knee, decreases in my foot and ankle. The difference between the size of my two legs was 26% in March and now it’s 19%!! There was a teeny tiny increase in the size of my calf but my therapist credits that to my daily stationary bike riding, so it’s muscle build up, not fluid! My compression hose size has decreased, too! I think the combination of wearing the compression stocking faithfully (and the stocking is the heavy knit material), daily exercise, healthy eating, and the faithful wearing of the night garment have all worked together to give me these amazing results. And maybe the surgery is starting to display results. Maybe those transferred lymph nodes are working. Also, my leg skin is now soft and pliable. I have not had an infection in three or four years. The most visual proof was comparing a tracing of my foot when I began therapy in January — large, flat with no arch — and the tracing made yesterday – a thinner, shapely foot with an arch! I hope this news will inspire anyone who is considering the lymph node transfer surgery – or even to someone who finds all of the work associated with the care of lymphedema is well worth the effort. When I think back to the time that I actually tried to ignore my lymphedema by not wearing compression hose, I realize that this ignorance cost me so much. My leg began to swell to the extent that my family and friends were really worried about the appearance of my leg. Yesterday my therapist told me that unless she actually examined my leg, she would not even know I have lymphedema and a lay person definitely would not be able to tell.

I know that lymphedema is a very expensive condition to manage but the cost of not managing is so very much higher – physically and psychologically. All of the effort involved in the care is well worth it.”…. Sue

Previous posts from Sue’s journey

For more of Sue’s progress over the past 16 months just type Sue into the search button at the end of posts..


Thanks Sue for your latest update. Time is showing that the LNT helps the leg to respond much better to treatment and the wearing of compression garments. It is a slow process as the nodes start to grow and it takes a great deal of patience while-one waits for this to happen!! It can be so difficult as there is nothing that you can see to tell you it is working!! This is what I find so hard but the gradually reducing measurements are a very good sign that things are working. My leg is now only 5% bigger than my good leg, which is the smallest it has ever been. I did try a few days of not wearing compression but it did swell just a little by the end of the day… During the night it reduced again but I did not want to do this for to many days, as I did not want the leg to get worse again, but wanted to try it for a while and see the result… When the summer comes maybe there will be days when I can have my legs free!!! To all of you who have had LNT or who are thinking about it, I wish you all the best… Helen

Copyright © 2013-2014 by Helensamia. All rights Reserved.

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11 Ways to Boost your Lymphatic System


Some great ideas to help our Lymphatic system … Thanks for this which I am reblogging..

Originally posted on The Lymphie Life:


As a lot of us already know, the lymphatic system is a very important part of our body, so much so that it’s commonly referred to as “our second circulatory system.” The lymphatic system acts as a sort of bath for our cells, cleaning them and carrying the “cellular sewage” away from the tissues and into the blood, where it’s then delivered to either the liver or the kidneys for detoxification.

(“Cellular sewage” is made up of byproducts from bodily processes, over-the-counter and prescription drugs, illicit drugs, cigarette toxins, airborne pollutants, food additives, pesticides, and other toxins.)

When your lymphatic system gets sluggish, you feel sluggish, and that’s no good! There are countless benefits of getting your lymphatic system moving more efficiently: increased energy, less pain, and improved detoxification, to name a few. For us lymphies, a healthy lymphatic system is incredibly important, so today’s post is from an article…

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Sharing experiences


Sharing our experiences with others in similar circumstances helps ourselves and others.. For many years I felt very isolated dealing with Lymphoedema but since starting this blog it has opened many doors. Through social media I have been able to share my story and in return have learnt from others. When I was first diagnosed there was no one to turn to for information or helpful tips. Now via private FB groups we are able to learn from others, support each other and educate. Sharing others blogs has been of great interest. The emails I get from fellow “lymphies” and the sharing of other’s stories on my blog has been truly enlightening. So always remember, never be afraid to share your story, it will help you and in turn help others.

If you would like to share your story or ask a question please leave a comment and I will make contact with you… Also if you would like to update a previously told story I would enjoy the follow-up…. Thanks Helen

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It is not just a little bit of swelling!! Lymphoedema


This is a guest post that I did for the blog “Nancy’s Point”  …  I feel it is important to repost it to continue to build awareness and understanding of the problems associated with Lymphoedema. Nancy writes a wonderful blog on her experience with Breast Cancer and as we know Lymphoedema can be a side effect of Breast Cancer treatment. In fact Lymphoedema can be a side effect of any cancer treatment where lymph nodes are removed. There is also Primary Lymphoedema where people are born with a weakness in their lymphatic system, issues can arise at birth or later in life. Lymphoedema is often misunderstood and the impact on quality of life is often unknown. I hope this post brings better understanding.


It is not just a bit of swelling! Lymphedema

I am very excited to have been invited by Nancy to write a guest post on Lymphedema, as March is Lymphedema Awareness Month. Approximately 10 million Americans and 100 million worldwide suffer from Lymphedema, as stated by the Lymphatic Education and Research network this year, but there is still much ignorance, misdiagnosis and misunderstanding around this condition. In this post I will be writing about Secondary Lymphedema but we should also acknowledge those with Primary Lymphedema who were born lacking important Lymph Nodes in parts of their bodies. Even though so many people suffer from Lymphedema, few know about it, unless they have it themselves or know someone.

My journey with Lymphedema started at the end of my treatment for Uterine cancer 12 years ago and like many, the removal of Lymph nodes and follow-up radiation destroyed part of my lymphatic system, leading to swelling, discomfort, pain, lack of mobility and infections. I remember seeing my surgeon before my radical hysterectomy, I was concerned over the removal of the lymph nodes, as I felt I still needed them!! His response was, ” It is better than being dead!” Needless to say that was the end of that conversation. During surgery I had 22 nodes removed in the groin area and 28 sessions of pelvic radiation. The Lymphedema came up as soon as I finished treatment. We have between 600 and 700 lymph nodes in our body, but when crucial nodes are removed, (radiation and surgical scarring also destroy the surrounding lymphatic vessels) fluid will collect in the limb and cause Lymphedema.

Three litres of fluid a day is removed from the tissues via the lymphatic system and passed into the circulatory system. The lymphatics are the “garbage disposal system” of the body with the lymph nodes acting as a “Cleansing system,” purifying, filtering, destroying bacteria and toxins. It is however, sadly the way that cancerous cells spread to other parts of the body, hence their removal during treatment. The lymphatics are an important part of the immune system and removal of nodes leaves one vulnerable to infection in that area. Unlike the vascular system the Lymphatic system requires the movement of muscles to push the flow of lymph through the body, there is no heart pumping as in blood flow.

When my leg first started to swell I was really scared, it felt like a tree trunk, heavy, uncomfortable,unsightly, my normal clothes would not fit and I felt self-conscious. Fortunately a friend told me about a workshop that was being held at Westmead hospital in Sydney. There I found much-needed help, a rehabilitation hospital, Mt Wilga in Hornsby, that specialised in treating Lymphedema. There followed five weeks of Complex Bandaging, Manual Lymph Drainage and Laser. My leg was thickly bandaged like having a plaster cast on. These were removed only to shower, which I did at the hospital, I drove each day from home for this treatment. At the end of five weeks my leg had reduced in size to just a little bigger than my good leg. I was then measured for a compression garment, from waist to ankle on the bad leg and to the knee on the good leg, a real passion killer!! I felt miserable. However over the years I spent a great deal of time walking in water which really helped the swelling, as it acts as a natural compression. Exercise is essential to help the lymphatics, as they need movement to function, elevating the leg whenever possible, raising the end of the bed all helped and eventually I was able to convert to just a compression stocking on the bad leg. Importantly when ever I fly however I wear compression tights to protect both legs from further damage. Though I have never done it myself yoga is very good for helping Lymphedema.

This would have all been manageable, but I experienced repeat infections, even though I was very careful to look after my leg well. These infections called Cellulitus, caused by the lack of “cleansing” nodes, would come up in half an hour and require a trip straight to hospital for intravenous antibiotics for ten days. Needless to say this impacted on my work and home life but we managed. That was until 2010 when an infection spread to my heart and I was diagnosed with Pericarditis. Fluid was removed from around the heart and I had four weeks of strong antibiotics via a PICC line, as it is almost impossible to find a good vein in my arms due to previous treatment.

After this I started to look for alternative treatments for the Lymphedema. Something that would maybe cure the Lymphedema or lessen the infections. I found out about Dr Corrine Becker, who pioneered Lymph Node Transfers in Paris, and sent her an email to ask if any Doctors in Australia did this surgery. She had trained many doctors in the US and elsewhere but not Australia. I continued to send out emails to the various Lymphedema specialists. One day a reply came inviting me to join a research program at Macquarie University Hospital in Sydney, started by Prof. Boyages, who is a Breast cancer specialist. As is the case overseas much of the research into surgical intervention for Lymphedema is funded by the Breast Cancer community, due to the high incidence of Lymphedema in the arms of patients after treatment for Breast cancer. He and other doctors wanted to find a way of helping patients with arm Lymphedema. They realised that this was not just about a “little bit of swelling”, but a life changing side effect of treatment that was affecting patients, mentally and physically, as well as becoming a financial burden for the rest of their lives. In some cases surgery is now being done as part of the reconstructive process, as the sooner new nodes are put into the arm, the better the response. Nodes in this case are often taken from the groin and placed in the armpit. Other patients may have it done years after the onset of Lymphedema and may also need some liposuction to remove stubborn fibrotic areas. There has been great success in improving the arms of these patients and giving them a better quality of life. Surgery for Lymphedema of the legs is more recent and takes longer to see results. In some cases two transfers are needed to groin and lower leg. For a patient to be eligible for LNT to arm or leg they need to be assessed by a surgical Lymphedema specialist. Their Lymphatic system would be mapped to find suitable nodes to harvested and the best position for placement to get maximum results.

March 14th 2013 I had the first leg Lymph Node transfer in Australia, Lymph nodes were taken from my neck and placed in my left knee. I started to create a blog about this, as I felt it needed to be documented. I called it “My Lymph Node Transplant,” it has now grown to include many articles, videos and stories that I feel will help people manage their Lymphedema. It is also a great resource for those who are having Lymph Node Transfers or other surgery world-wide for Lymphedema, in both arms and legs, as this is now becoming more common. My leg is doing well a year later the nodes are growing but it is a slow process, so far I have had no infections and that makes me very happy!! The hope is that as the surgeons become more experienced this will become a viable treatment for Lymphedema.


Copyright © 2013-2014 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