National Frameworks
Since its incorporation in 2009 – the International Lymphoedema Framework (ILF) has been supporting the efforts of countries focused on establishing their own national frameworks to advance lymphedema care in their respective countries. We are proud to have the following national frameworks established and part of the ILF network: Belgium, Canada, Denmark, Australia, Japan, Italy, Greece, France,The Netherlands, United States, UK and most recently Ireland as highlighted below. Several other countries, both in developed and developing countries, are in various stages of organizing a national framework. We plan to highlight at least one country framework in each of our newsletters – to give you a perspective of what actions, activities and developments are happening around the world. As this is our first newsletter in a while we felt it would be a great idea to highlight both new and long established frameworks alongside each other.
National Lymphoedema Framework Ireland
It is with great pleasure, excitement and a little trepidation we are delighted to say NLF Ireland has officially been launched by Dr Vaughan Keeley, Margaret Sneddon, Kay Morris and Meadbh Mac Sweeney, all guest speakers at the first National Lymphoedema Conference held at the Mater Misericordia in Dublin on September 24th. We have 11 very strong stakeholders from South, East and West Ireland representing patients and lymphoedema service users, nurses, physiotherapists, occupational therapists, educators in lymphoedema, MLD therapists both public and private, and a consultant vascular physician who has been a strong patient advocate.
Various stakeholders will have a voice back to the associations who have worked tirelessly over the last 15 years and more, to improve services for lymphoedema patients. Such associations include Lymphoedema Ireland, Irish Cancer Society, and MLD Ireland.
It will be incredibly powerful to have such strong proactive voices, each extremely experienced in their own field, clinically and academically, around the same table working together for one cause … to raise awareness of and improve services for those with lymphoedema in Ireland.
It is equally powerful and supporting to be part of a larger framework, thus avoiding the need to ‘reinvent the wheel’ as the suggested guidelines and structure facilitate focused discussion.
The Danish Lymphoedema Framework
The Framework has been given a grant of 5 million kroner, over four years, from the Danish Cancer Foundation, to conduct a study on early detection of lymphoedema in the lower extremities after gynaecological cancer. Three out of four of the biggest health departments are joining the study. The remaining department could not participate as they had another study running at the same time. The protocol is almost ready for approval.
The Canadian Lymphedema Framework ( CLF)
The CLF is celebrating the 15th issue of Pathways, their national lymphedema magazine. The three pillars of the CLF are Education, Research and Partnerships. Since 2009, the CLF has been busy publishing standardized educational material, consensus statements, research agendas for Canada as well as leading and participating in lymphedema research. A new report highlighting all the successes of the CLF can be found on page 25 of their Fall magazine which can be found here
. Learn more about the role of the ILF, CLF and its collaborative model with existing lymphedema organizations in the article on page 22 entitled “Lymphedema Community Organizations Can Drive Change”. We encourage you to learn more about this framework by visiting the newly launched website www.canadalymph.ca.
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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
lymphfantastic 