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Declare March 6th „World Lymphedema Day™“ Bitte unbedingt die Petition unterschreiben! Danke an Lymphatic Education and Research Network

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Wir wissen alle das wir noch viel zu bewegen haben. Um so mehr Menschen, auch die ,die nicht betroffen sind, bescheid wissen, um so mehr können wir bewegen. Ich danke das Lymphatic Education & Research Network für deren Arbeit und Einsatz. Alle Nationen müssen zusammenarbeiten damit Forschung und somit neue Therapie Möglichkeiten uns zur Verfügung stehen. Wir sollten das alle Unterschreiben! Ich danke euch für die Unterstützung und wünsche alles liebe.

Did You Know? 
  • The World Health Organization estimates that over 150 million people worldwide have secondary lymphedema.
  • The National Institutes of Health (NIH) states that the incidence of primary lymphedema could be as high as 1 in 300 live births.
  • Of the 1.4 billion people in 73 countries threatened by lymphatic filariasis, commonly known as elephantiasis, 120 million are currently infected and 40 million of these patients are disfigured and incapacitated by the disease.
  • The Centers for Disease Control and Prevention (CDC) warns that the incidence of secondary lymphedema among cancer survivors is between 20-40%. Lymphedema is estimated to affect up to 10 million people in the United States alone according to Stanford University. This represents more Americans than those suffering from AIDS, Parkinson’s disease, Muscular Dystrophy, Multiple Sclerosis and ALS — combined.
  • The continuum of diseases impacted by the lymphatic system includes heart disease, AIDS, diabetes, rheumatoid arthritis, and cancer metastasis.
  • Lymphatic diseases routinely go undiagnosed and untreated, and research is grossly underfunded.
Our Mission 
Our mission is to make lymphedema and lymphatic disease awareness, education, and research a global health priority.

 

Sign the World Lyphedema Day Petition Today   
Visit the online petition site at Change.org and add your signature. Your support will be shared with decision makers around the world. Then, add your voice and share your story. Make the world understand that fighting these diseases needs to be a global health priority. Finally, help this petition go viral. Forward it on social media and send it to friends and family via email.


The Lymphatic Education & Research Network is the official international sponsor of World Lymphedema Day, which occurs on March 6th.

 

The First Annual World Lymphedema Day— March 6, 2016

The time has come to mount a worldwide campaign against a Lymphedemic®. Lymphedema (also spelled „lymphoedema“) and lymphatic disease advocates from around the world are joining together to establish the first annual World Lymphedema Day. March 6th was chosen by advocates in India, Europe and elsewhere to coincide with the current recognition of this day in the United States, Canada, and Australia. The Lymphatic Education & Research Network fights lymphedema and lymphatic disease through education, research and advocacy and is proud to be the international sponsor of World Lymphedema Day.

Why We Need World Lymphedema Day
Great attention is paid to the battle against cancer. Yet, most people haven’t heard of lymphedema, which cancer frequently leaves in its wake. We hear little of the children born with lymphatic malformations or those who inherit lymphedema. There is silence on the issue of wounded war veterans, civilian casualties and others who suffer from lymphedema due to physical trauma or as a result of surgery. Too many who suffer feel alone. Too many medical professionals remain uneducated about this disease or underplay the devastating impact it has on a person’s quality of life. Too many go without the necessary therapeutic care. And this tragedy is compounded when government and private health insurers deny patients coverage for even the universally accepted treatments that this disease demands.

The World Health Organization estimates that over 150 million people worldwide have secondary lymphedema, while the National Institutes of Health (NIH) states that the incidence of primary lymphedema could be as high as 1 in 300 live births. Of the 1.4 billion people in 73 countries threatened by lymphatic filariasis, commonly known as elephantiasis, 120 million are currently infected and 40 million of these patients are disfigured and incapacitated by the disease. The Centers for Disease Control and Prevention (CDC) warns that the incidence of secondary lymphedema among cancer survivors is between 20-40%. Lymphedema is estimated to affect up to 10 million people in the United States alone according to Stanford University. This represents more Americans than those suffering from AIDS, Parkinson’s disease, Muscular Dystrophy, Multiple Sclerosis and ALS—combined. Finally, the continuum of diseases impacted by the lymphatic system includes heart disease, AIDS, diabetes, rheumatoid arthritis and cancer metastasis. Yet, lymphatic diseases routinely go undiagnosed and untreated, and research is grossly underfunded.

A Call to Action
The message from lymphedema and lymphatic disease advocates is clear. “Lymphedema and lymphatic diseases are ready to take their place as international priorities.” The days of being invisible are over. Together, we announce World Lymphedema Day to be celebrated on March 6th. Join this movement by signing the online petition. Let’s show that every country around the globe supports this cause. LE&RN and its international members are inviting patients, their family and friends, advocates, politicians and treatment practitioners from every country to make their voices heard by signing the petition to recognize World Lymphedema Day.

Together, we can change the world.

William Repicci
Executive Director
Lymphatic Education & Research Network

About LE&RN
Founded in 1998, the Lymphatic Education & Research Network is a 501(c)(3) not-for profit organization whose mission is to fight lymphatic disease and lymphedema through education, research and advocacy. LE&RN provides valuable education resources for the millions of people who suffer from lymphedema and lymphatic disease. LE&RN fosters and supports research that can deepen the medical community’s understanding of the lymphatic system. For more information about lymphatic disease or the Lymphatic Education & Research Network, please visit www.LymphaticNetwork.org or call (516) 625-9675.

https://www.change.org/p/white-house-u-s-senate-u-s-house-of-representatives-world-health-organization-united-nations-global-leaders-declare-march-6th-world-lymphedema-day

 

 

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Autor: monica boersch

Vor ein paar Jahre bin ich an Krebs erkrankt, bedingt durch meine Wertheim OP, Bestrahlung und Afterloading habe ich Lymphödeme bekommen, für mich sehr überraschend da ein paar Jahre dazwischen lagen, ich wusste das etwas nicht stimmt aber leider konnten unzählige Ärzte nicht helfen. Hier ist es auch so, wie in viele viele andere Länder auch, dass Lymphatische Erkrankungen erstens nicht wirklich ernst genommen werden und zweitens das kaum ein Arzt darüber Bescheid weiß, wie den auch, wenn in den Lehrbüchern so gut wie NICHTS steht. Mein Bestreben ist alles zu tun was in meiner Macht steht um dafür zu sorgen das jeder der betroffen ist weiß was er/ sie tun kann um sein Leben wieder so gestalten zu können wie er/sie das möchte. . Ich suche und suche immer weiter nach alternativ Möglichkeiten um meinen Leben so normal wie möglich zu gestalten. Die Empfehlungen die ich gebe sind bei mir durchaus wirksam und ich erziele gute Erfolge und behalte meine Lebensqualität. Mein Blog ist kein Ersatz für eine Ärztliche Betreuung und ich empfehle jeden mit seinem Arzt über Therapie Möglichkeiten etc. zu sprechen. Ich kann nur anregen und durch meine eigene, persönliche Erfahrung eventuell einen weg aufzeigen. Seit 2009 beschäftige ich mich weit über das übliche hinaus mit Lymphödeme. Nicht nur die „Diagnose“ interessiert mich, sondern ebenso was für einen Effekt es hat auf unser Sozialleben und unser Selbstwertgefühl. Ich habe viel Zeit und Geld investiert in andere Länder zu reisen um alternativen kennenzulernen, ich war bei Internationale Firmen als Gast um zu sehen welche Lösungen geboten werden, habe fast jeden Lymphologischen Kongress besucht um mich weiter zu bilden und einige Projekte als Freelancer machen können. Wie ihr sieht ist das weitaus mehr als nur ein Blog, es müssen sich grundliegende Dinge verändern um uns alle das zu geben was wir verdienen, Respekt, Empathie und das Bewusstsein das wir nichts Vorübergehendes haben, sondern das dieses ein Teil unseres Lebens ist und auch bleibt. After being diagnosed with Cancer and going through treatments, Wertheim operation, radiation therapy and afterloading I was suddenly hit by Lymphedema. Totally surprising since nobody even gave me a hint that this could happen. Running from one doctor to the other trying to find out what is wrong with me and why my body was changing so quickly, once again being in the situation of not having control of anything. This made me so angry that I started studying like crazy, I wanted to find out why we are left alone, why doctors don’t have a clue (sorry, most doctors) about Lymphedema and the consequences in all aspects of our lives. Sadly, I had to realize that hardly anyone knows anything about it. I started my quest to find alternatives in treatments, I traveled around the world investing my time and money, fortunate enough to spend time in companies specialized in Lymphedema treatment to learn all that I could and can. I hardly miss any Lymphatic congress, listening to the internationally known doctors, discussing what is important for us as patients. I have done some freelance work for the companies that I believe in and had the chance to work with a wonderful company in New Jersey. I have tested alternatives and I am still searching and studying because it is my quest to change things for all affected by this, not only our physical wellbeing but most importantly the impact that it has on our daily life. It’s not something that’s going to go away, it’s with us until the end and the minimum that we can expect is being taken seriously, respect and empathy for our situation and the importance for all of us that have the possibilities to change things for the better. There is so much work to do, and I am not going to give up. As you can see this is more than a blog. If you find something interesting on Lymphfantastic but you are having problems with the German, then just send me a message and I will be happy to translate that for you, my native language is English so that is no problem. Have a great day and looking forward to hearing from you soon. Bless you all, Monica

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