A letter from Juan Manuel in Spain

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A letter from Juan Manuel in Spain

Postby patoco » Thu Jun 22, 2006 12:30 am

A letter from Juan Manuel in Spain

Original Post 10/05/2004

I wanted to share a letter I received from a visitor from Spain.
Juan, like has us lymphedema and his letter deeply touhed me and so eloquently expresses what we all feel, what we hope for, of the pain we endure. Thank you Juan!

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"I really don't know where to start this message, but I will try to explain myself the best I can. Looking up Lymphoedema on the net, I found the Filiaratic Lymphoedema web site. I think it is very important and wonderful that people all over the world take care of this problem. Without your, and other peoples support, this situation would never progress. The terrible situation of these sick and very poor people must be looked after by all of us.

I recently read a newspaper article which talked about Elephantiasis being eradicated in the Third World in the future, but if we look deeply into this problem, we will see that this is impossible. Filiaratic Lymphoedema´s worst stage is Elephantiasis, but it must be understood that all Lymphoedemas that are not properly treated will finally become Elephantiasis. Elephantiasis is the third and worst condition of Lymphoedema, and a person can get to that stage suffering from any of the different kinds of Lymphoedemas that can be found. So if we are only treating Filiaratic Lymphoedema, due to the terrible Elephantiasis conditions patients have to suffer, what with all the other Lymphoedemas, which will also become Elephantiasis if not treated. There are two types of Lymphoedema, some people are borne with it, and others many get it after surgery or traumas or by insects, and if any of these different types are not treated, they will all get Elephantiasis in the same way.

But here comes then the big problem now. The World Health Organization estimated in 1982, that 90 million people were affected by Filiaratic Lymphoedema, but it is known that there are about 500 million people suffering from all forms of Lymphoedema in the world. ( Please look up the Australian Lymphoedema Association web site for more information). So you can see that this terrible sickness will never disappear, and there will always be new cases of people suffering from some form of Lymphoedema, and anyone of us can get to suffer it, and that all become Elephantiasis if not treated.

But it is strange how people speak of Elephantiasis as a Third World sickness, and then I ask myself, and who is looking after all the rest?, and what is going to happen to Elephantiasis in the countries which are not Third World. I know that the Third World is very poor indeed, but in the rest of the world, there are many disabled people due to Lymphoedema, who also at the same time can#146;t afford to pay for private treatment, or whose Health Service gives them no solution to their problem, and who also have to live with ELEFANTIASIS. I live in Europe, and in my country there are people who have Elephantiasis because of not receiving treatment. There are many people suffering from Lymphoedema in the Western world, and many of our governments, due to cuts in Health Services, are not giving people the treatment they need, and so many sick people are living terrible situations. Why do I as many others have to fight with our health system to receive treatment, when it is known that Lymphoedema that is not treated will finish off into Elephantiasis or Cancer, and why are governments hypocrites when they see only Elephantiasis in the Third World, and don#146;t want to see their own Elephantiasis sufferers? After fighting, I now receive treatment, but the ones who can not due to their disability or economical situation, or don#146;t know how to, receive nothing. In Western countries there are many sick with Elephantiasis, and many are not being treated.

And now you see, why I think this problem will always be here, only until the International Health Organization make a Statement on this sickness. No one will have guaranteed treatment, while there is no International Statement on it. Governments are able at this moment to take advantage of there being no Statement, and to do as they wish, and some, due to cuts in health services, don´t treat these patients at all. These are so many people affected, that it is an economical question for many governments. One of every three woman operated of breast cancer will have Lymphoedema. If we already know what is the best treatment for Lymphoedema, why is it so badly known and treated in the world? As always due to economical reasons. I live in Europe, and you don#146;t have to go to Africa to see people suffering from Elephantiasis due to their Lymphoedema. We live in an hypocratic society, where we see the suffering which is far away, but don#146;t look a the one we have around us. My daughter was born with Lymphoedema, and I have had to fight for treatment, and always struggeling that some day it does not get to the stage of Elephantiasis. In each and every country there are people who suffer Elephantiasis, so this is not only a Third World sickness, there are many children and people suffering Elephantiasis all over the world, and what we urgently need is that a Proper Statement be made by The World Health Organization on this sickness. It must also not be forgotten that any one of us can get to suffer Lymphoedema at any time in our lives.

I have just started a Lymphoedema Association in the North of my Country, and am trying to make a Confederation with the other ones, to fight for the right of all to good treatment. It is also my interest to try make a European Confederation of Lymphoedema Associations, and to try get the European Parliament to make a statement on this sickness, but as I am alone with this, it will take time. But what the world urgently needs is for an International Statement on Lymphoedema, and I wonder if you could please help in this way. I am sure your Foundation has enough influence to promote an International Statement on: PEOPLE ANYWHERE IN THE WORLD LYMPHEDEMA = ELEFANTIASIS

My voice is little, I too am sick, and little can I do against governments and international economical interests. Please think about this very big problem that affects so many sick in the world, and if you can please help in any way."

Yours Sincerely,

Juan.

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Responses

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Silkie

Thanks for sharing Pat,
juan is so right,
I got (i hate this title) Elephantitus, because Doctors could not be bothered to diagnose it they look see enlarge limbs and sat FAT DIET
the gross figures are due to shameful mis-diagnosis,neglet on the part of health services in every country, and for someone to suffer any desease because they dont have medical insurance --------
I think the first Hospital was on the isle of cos in Greece
and the man that set it up well he had an oath that i still believe
is the oath all young doctors take today

this is just a relevent section of the oath

I will apply, for the benefit of the sick, all measures which are required, avoiding those twin traps of overtreatment and therapeutic nihilism.

I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon's knife or the chemist's drug.

the full modern and ancient script are at the following site:-
http://www.pbs.org/wgbh/nova/doctors/oath_modern.html

Warmth sympathy and understanding---------

hugs silksxxxxxxxxxxxxxx
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