Die Suche geht weiter- The search goes on


Now there’s new hope for a possible pharmaceutical treatment for lymphedema

Study finds first possible drug treatment for lymphedema

Collaboration between two Stanford labs has resulted in the discovery of a molecular cause for lymphedema and the first possible drug treatment for it.

Tracey Campbell has lived for seven years with lymphedema, a chronic condition that causes unsightly swelling in her left leg.

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The disease, which stems from a damaged lymphatic system, can lead to infections, disfigurement, debilitating pain and disability. There is no cure. The only available treatment is to wear compression garments or use massage to suppress the swelling, which can occur throughout the body in some cases. Campbell — who had two quarts of excess water in her left leg by the time she was diagnosed — has for years worn restrictive garments 24 hours a day and has spent an hour each night massaging the lymph fluid out of her leg.

Lymphedema is uncomfortable, exhausting and dangerous if left uncontrolled. As many as 10 million Americans and hundreds of millions of people worldwide suffer from the condition, many from the after-effects of cancer therapy treatments.

“There’s this extra layer of emotional burden,” said Campbell, who added that she has to be constantly vigilant to protect against infection. “All you want to be is normal.”

Now there’s new hope for a possible pharmaceutical treatment for patients like Campbell. A study led by scientists at the Stanford University School of Medicine has uncovered for the first time the molecular mechanism responsible for triggering lymphedema, as well as a drug with the potential for inhibiting that process.

The study was published May 10 in Science Translational Medicine.

“We figured out that the biology behind what has been historically deemed the irreversible process of lymphedema is, in fact, reversible if you can turn the molecular machinery around,” said Stanley Rockson, MD, professor of cardiovascular medicine and the Allan and Tina Neill Professor of Lymphatic Research and Medicine at Stanford. Rockson shares senior authorship of the study with Mark Nicolls, MD, professor of pulmonary and critical care medicine. Stanford research scientists Wen “Amy” Tian, PhD, and Xinguo Jiang, MD, PhD, share lead authorship of the study and are also affiliated with the Veterans Affairs Palo Alto Health Care System.

‘Fundamental new discovery’

“This is a fundamental new discovery,” said Nicolls, who is also a researcher at the VA Palo Alto.

The researchers found that the buildup of lymph fluid is actually an inflammatory response within the tissue of the skin, not merely a “plumbing” problem within the lymphatic system, as previously thought.

Working in the lab, scientists discovered that a naturally occurring inflammatory substance known as leukotriene B4, or LTB4, is elevated in both animal models of lymphedema and in humans with the disease, and that at elevated levels it causes tissue inflammation and impaired lymphatic function.

Further research in mice showed that by using pharmacological agents to target LTB4, scientists were able to induce lymphatic repair and reversal of the disease processes.

“There is currently no drug treatment for lymphedema,” Tian said. Based on results of the study, the drug bestatin, which is not approved for use in the United States but which has been used for decades in Japan to treat cancer, was found to work well as an LTB4 inhibitor, with no side effects, she said.

Based on the research, bestatin (also known as ubenimex), is being tested in a clinical trial that started in May 2016 — known as ULTRA — as a treatment for secondary lymphedema, which occurs because of damage to the lymphatic system from surgery, radiation therapy, trauma or infection. Primary lymphedema, on the other hand, is hereditary. The results of the research pertain to both types.

Rockson is principal investigator for this multisite phase-2 clinical trial.

“The cool thing about this story — which you almost never see — is that a clinical trial testing the therapy has already started before the basic research was even published,” Nicolls said. “This is the first pharmaceutical company-sponsored trial for a medical treatment of lymphedema, a condition that affects millions.”

Nicolls and Tian are co-founders of Eiccose LLC. Eiccose is now part of Eiger BioPharmaceuticals, which gets the drug from Nippon Kayaku in Japan. Eiger is sponsoring the clinical trial. Nicolls and Rockson are both scientific advisers to the company.

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Livestream Symposium: The Genetic Basis of Primary LE in Humans, Current State of the Science am 22. Mai

Quelle: Livestream Symposium: The Genetic Basis of Primary LE in Humans, Current State of the Science

Schauen Sie sich live, organisiert und ermöglicht von LE & RN ein Symposium (in Englisch),  über “Die genetische Basis der primären LE in den Menschen, der aktuelle Stand der Wissenschaft”, mit Dr. Peter Mortimer an . Sie können zuschauen, auf der Website von LE & RN oder auf Youtube. Es folgt live „Fragen und Antworten“. Das Symposium beginnt am Montag, den 22. Mai um 10 Uhr Eastern Daylight Time. (3pm GMT, 9am CDT, 8 Uhr MDT, 7 Uhr PDT).

Professor Peter Mortimer, ausgebildet in der Dermatologie in Sheffield und Oxford, wurde ernannt als Arzt im“ Skin Department ” bei St. George’s und Beratender Hautarzt an die Royal Marsden Hospital seit 1986 und ist Professor für Dermatologische Medizin an der University of London seit 2000. Seine Interesse an Lymphgefäße begann in Oxford, wo er seine These über, die Messung des Lymphflusses geschrieben hat. Die aktuelle Forschung konzentriert sich auf Brustkrebs-bezogene Lymphödeme, die genetische Basis der primären Lymphödem und Lipödeme sowie Melanome die durch Lymphgefäße verbreitet werden. Er hat über 240 Publikationen die auf PubMed veröffentlicht worden. Er ist Chef-Forscher in Forschungsprogrammen mit Zuschüssen von The Wellcome Trust, British Heart Foundation und Cancer Research UK. Seine klinische Praxis beschäftigt sich fast ausschließlich mit chronischen Ödemen, Lymphödeme, lymphatischen Fehlbildungen, lymphgebundenen Erkrankungen und Lipödeme. Er ist ein Gründer von des Lymphoedema Support Network sowie der British Lymphology Society, und ernannt zu den ersten klinischen Training Fellow in der Lymphgefäßmedizin in Großbritannien.

Es lohnt sich sicherlich, auch mit keine 100% English Kenntnisse dieses anzuschauen, entweder live oder zum späteren Zeitpunkt. Nochmal meinen herzlichen und aufrichtigen dank für die fantastische Arbeit und globalen Einsatz von der Lymphatic Education and Research Network.


Join LE&RN for this livestreamed Symposium, “The Genetic Basis of Primary LE in Humans, Current State of the Science,” with Dr. Peter Mortimer. You can watch it above, here on LE&RN’s website, or on Youtube. It will be followed by a live Q&A. The Symposium will begin on Monday, May 22, at 10am Eastern Daylight Time. (3pm GMT, 9am CDT, 8am MDT, 7am PDT).

Professor Peter Mortimer trained in Dermatology in Sheffield and Oxford. He was appointed ‘Physician to the Skin Department’ at St George’s and consultant skin physician to the Royal Marsden Hospital since 1986 and has been Professor of Dermatological Medicine to the University of London since 2000. Interest in lymphatics began in Oxford where he undertook his thesis on ‘the measurement of skin lymph flow’. Current research is focused on breast cancer related lymphoedema, the genetic basis of primary lymphoedema and lipoedema as well as melanoma spread by lymphatics. He has over 240 publications cited on PubMed. He has been Chief Investigator on research programme grants from The Wellcome Trust, British Heart Foundation and Cancer Research UK. His clinical practice deals almost entirely with chronic oedema, lymphoedema, lymphatic malformations, lymph-related disorders and lipoedema. He is a founder of both the Lymphoedema Support Network and British Lymphology Society and appointed the first Clinical Training Fellow in Lymphovascular Medicine in the UK.

LE&RN Symposium Real-time Visualization of Lymph Movement

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Thanks for all the fantastic work you are doing Lymphatic Education & Research Network !

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Understanding Lymphedema – Lymphedema & Wound Care Session – LE&RN -David Zawieja PhD

Einen super interessanten Beitrag! Herzlichen Dank für die Bereitstellung.


“LE” DAS NEUE INTERNATIONALE SCHLAGWORT – What’s in a Name – Putting LE Center Stage

Ein wunderbarer und anregender Artikel die alle betroffenen, Firmen, Vereine und Mediziner am Herzen liegen muss.  Ich habe mir die Mühe gemacht und das für den deutschsprachigem raum übersetzt. Die Übersetzung findet ihr unter dem originalen Artikel.


William Repicci  Executive Director at Lymphatic Education & Reseach Network (LE&RN) Veröffentlicht 8.Februar 2017

A woman called me recently. She had had lymphedema for a decade and exclaimed, “When I was first diagnosed with this disease, I talked to my husband, children and friends. They didn’t understand and couldn’t remember that my disease was called lymphedema. Lymphedema is now my private hell.”

This scenario gets played out thousands of times a day. Lymphedema is a combination of two words (“lymph” and “edema”) that most people will never utter once in their lifetimes. As a result, combining them only doubles the challenge of getting this word lodged in the public’s brain. This is true of many diseases, but it is also true that those diseases have established easy-to-remember acronyms.

We have AIDS, MS, ALS, PTSD, SARS, TBI, RA, HPV, and IBD to name a few. In fact, check out Wikipedia for disease and disorder acronyms and you will find hundreds. However, look under “L” and lymphedema is nowhere in sight. And yet, there is in fact an acronym for lymphedema that is sporadically used—“LE.”

Turn on your television and you are likely to hear how advertising giants deal with getting a new disease branded for the general public. “Do you have Restless Leg Syndrome – RLS? Ask your doctor…” Or, “Are you suffering from OIC? Opioid Induced Constipation is a common condition…” There is much for us to learn from those spending millions of dollars to brand their diseases in order to engage the public.

The fact that there are two spellings routinely used in the literature further compounds the problem. The United States, Canada and other countries spell the disease “lymphedema.” Great Britain and much of the rest of the world refers to it as “lymphoedema.” Try a Google search using these different spellings and you’ll get a completely different list of resources. This raises yet one more hurdle to universal recognition of the disease.

Combine all these factors and the result is that lymphedema manages the miraculous feat of both affecting more than 150 million worldwide, while being invisible and unrecognized by the public. One by one, we need to remove all the obstacles that stand in the way of lymphedema becoming a global priority.

In response to this, LE&RN will begin to routinely promote the acronym LE. Others may come up with an even better way to make lymphedema as commonly known as AIDS, or MS, or ALS. My guess is that if you asked most people to tell you what those acronyms stood for, you’d get blank faces or muddled answers at best. The fact is that it doesn’t matter. People merely need to attach the acronym to the disease, and then begin to accumulate information.

We also ask the international community to weigh in on the dilemma of two spellings competing in the literature. Change is never easy, and it means compromise. Collective use of an agreed-upon acronym brings the world a little bit closer.

German translation 

Eine Frau rief mich vor kurzem an. Sie hat seit Jahrzehnte Lymphödeme und sagte mir: “Als ich zum ersten Mal mit dieser Krankheit diagnostiziert wurde, sprach ich mit meinem Mann, Kindern und Freunden. Sie verstanden das alles nicht und konnten sich das Wort nicht merken. Lymphödeme sind jetzt meine private Hölle. ”

Dieses Szenario wird tausendmal am Tag wiederholt. Lymphödeme ist eine Kombination von zwei Worten (“Lymphe” und “Ödem”), dass die meisten Menschen nie in der täglichen Unterhaltung nutzen werden. Infolgedessen ist dieses kombinierte Wort eine wahre Herausforderung und es muss dafür gesorgt werden das es bei der Allgemeinheit bekannt wird. Dies gilt für viele Krankheiten, aber bei den meisten anderen Krankheiten gibt es eine Reihe von leicht zu merkende Akronyme.

Wir haben AIDS, MS, ALS, PTSD, SARS, TBI, RA, HPV und IBD, um nur einige zu nennen. In der Tat, schaut mal auf Wikipedia für Krankheiten und sie werden hunderte von Akronyme finden. Schauen sie allerdings unter „L” und Lymphödem ist keines in Sicht. Und doch gibt es in der Tat ein Akronym für Lymphödeme, das nur sporadisch verwendet wird – “LE”.

Schalten Sie Ihren Fernseher ein und Sie werden wahrscheinlich hören, wie Werbe-Riesen sich immer wieder damit befassen eine neue Krankheit für die breite Öffentlichkeit bekanntzumachen. “Haben Sie Restless Leg Syndrom – RLS? Fragen Sie Ihren Arzt … “Oder:” Leiden Sie unter OIC? Opioid Induced Constipation… “Es gibt sehr viel was wir noch lernen müssen von den Unternehmen die Millionen von Dollar ausgeben um eine Krankheit der Öffentlichkeit bekannt zu machen und sich dafür zu engagieren.

Die Tatsache, dass es zwei in der Literatur routinemäßig verwendete Schreibweisen gibt, steigert das Problem. Die Vereinigten Staaten, Kanada und anderen Ländern buchstabieren die Krankheit “Lymphedema.” Großbritannien und ein Großteil des Restes der Welt bezieht sich auf sie als “Lymphoedema.” Versuchen Sie eine Google-Suche mit diesen verschiedenen Schreibweisen und Sie erhalten völlig andere Listen der Ressourcen. Dies ist eine erhebliche Hürde für die allgemeine Bekanntmachung und Aufklärung diese Erkrankung.

Kombinieren Sie alle diese Faktoren und das Ergebnis ist, dass Lymphödeme Auswirkungen hat auf mehr den 150 Millionen Menschen weltweit, während diese Erkrankung unsichtbar und unerkannt bleibt für die Öffentlichkeit. Wir müssen alle Hindernisse einer nach einander beseitigen um dafür zu sorgen das Lymphödeme eine universelle Anerkennung erlangt.

Als Reaktion darauf beginnt LE & RN routinemäßig das Akronym LE zu fördern. Andere könnten einem noch besseren Weg parat haben um Lymphödeme so publik und bekannt zu machen, wie AIDS, MS oder ALS. Meine Vermutung ist, dass, wenn Sie die meisten Leute fragen, Ihnen zu sagen, wofür dieses Akronym steht, würden Sie leere Gesichter oder verworrene Antworten meistens erhalten. Tatsache ist, dass es keine Rolle spielt. Menschen müssen nur das Akronym kennen um dieses mit der Erkrankung in Verbindung zu bringen, und dann beginnen, sich zu informieren.

Wir bitten die internationale Gemeinschaft auch an dem Dilemma zu arbeiten das es zweier in der Literatur konkurrierender Schreibweisen gibt. Veränderung ist nie einfach, und es bedeutet sicherlich Kompromisse. Der kollektive Gebrauch eines vereinbarten Akronyms bringt die Welt ein wenig näher.


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I Support World Lymphedema Day!

Join us in Supporting World Lymphedema Day!
Lymphedema and lymphatic disease advocates from around the world are joining together to establish the first annual World Lymphedema Day. When LE&RN began hearing from advocates in Canada, India, Europe, and elsewhere that we needed a day to come together as a global community, we were proud to spearhead this call to action.
Sign the World Lymphedema Day Petition Today  

Visit our online petition site at, read LE&RN’s letter from Executive Director William Repicci, and add your signature. Then, add your voice! Share your story there. Tell the world why silence on this issue is no longer acceptable; why we must, finally, be heard. Finally, help this petition go viral. Forward it on social media and send it to friends and family via email.

Our goal is to have leaders around the world take notice. Together, we will change the world!

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Dr. Antoine Louveau, Fellowship Award Winner, talks about his research

Quelle: Dr. Antoine Louveau, LE&RN Fellowship Award Winner, talks about his research


Dr. Antoine Louveau, LE&RN Fellowship Award Winner, talks about his research

Dr. Antoine Louveau, LE&RN Fellowship Award Winner, talks about his research

Antoine Louveau, Ph.D., a Postdoctoral Fellow in the Center of Brain Immunology and Glia, in the Neuroscience department of the University of Virginia, VA, under the supervision of Dr. Jonathan Kipnis, is a LE&RN Research Fellowship Award recipient. We asked Dr. Louveau to tell us about his research.

What is the focus of your research?
My research focuses on the role of the Central Nervous System (CNS) lymphatic system in brain function in both physiological and pathological conditions. Until recently, the brain was thought to be among the few organs of the body to be devoid of a dedicated and functional lymphatic system and this was proposed to be a central reason for the immune privilege status of the brain. This discovery changes the game and we are now focusing on understanding how this lymphatic system works in the CNS and how it might be dysfunctional in neurological disorders, notably during Multiple Sclerosis and Alzheimer’s Disease.

What do you hope to learn from this research and what impacts will it have on the current body of knowledge?
I hope that this research will help us gain a better understanding of brain physiology. The question on how the brain drains and how antigens are exiting the CNS remains unclear. Similarly, we know that the brain is under constant immune surveillance that is important for the maintenance of brain function but the path for immune cells trafficking is still a matter of debate. In the periphery, the lymphatic system plays a major role on both of those functions, we then hope to understand how those systems are working in the CNS.

Ultimately, we hope to understand how dysfunction of the meningeal lymphatic system might initiate or participate in the development of neurological disorders such as Multiple Sclerosis and Alzheimer’s Disease (AD). AD is characterized by the accumulation of misfolded protein in the brain parenchyma that causes memory loss. Understanding how the CNS lymphatic system participates in the removal of molecular waste from the brain might help us understand why and how proteins are accumulating in the brain.

What clinical implications might grow out of this research?
We still have a long way to go but we are hoping that the meningeal lymphatic vasculature might be a new therapeutic target that will be more accessible than the brain parenchyma to offer new treatments for neurological disorders.

What might the field accomplish in the next few years?
I think that the lymphatic field has initiated its shift from working with the system as a whole and has started considering specific function that tissue lymphatics have to ensure the maintenance of those tissues. I believe that such approach is going to enrich our understanding of the lymphatic vasculature, reveal important tissue specific function that the lymphatic system ensures and provide new targeted therapies to treat disorders of the lymphatic system like lymphedema but also emphasize the implication of the lymphatic system in numerous other disorders.

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