This site started on
January 15, 2000.

Hello to all those people who suffer from lymphedema or just are interested in it. This page is meant to exchange experiences and ideas. People from all over the world can put their reactions in this guest book: men as well as women; sufferers of primary or secondary lymphedema; with edema in the arm or in the leg or wherever. The language is English because it is a world language: in that way as many patiënts as possible can be reached.

[Bandaged patëent.]
Go to the guestbook
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What is lymphedema?
Why I started this page (my personal story)
Where to find help
About the guestbook
Links in English
Links in Dutch, German and Swedish

What is lymphedema?

Maybe, when you happened to land incidentally on this page, you wonder what lymphedema is?

Imagine that you'd look like this: Then one day all your lymph nodes were removed
and there is a great chance that you wind up looking like this:
[Beautiful, slim creature] [Blob]

Or worse. In the worst case your blood vessels would have collapsed and you wouldn't be around anymore.
The chance that you'll get lymphedema may be larger than you think. For instance, you have a great chance to get stuck with lymphedema when you get cancer. During a cancer operation lymph nodes are taken away. The nodes are investigated to see if the cancer has not spread.
Result of the taking away of the nodes is that the the lymph fluid is not abducted anymore.
How large is the chance you get cancer? Quite large when you live in a wealthy society like the Netherlands or the US. The Netherlands rank high (highest?) on the list of countries where breast cancer occurs. 10% of Dutch women will have breast cancer on a certain moment in their lives. How many of this 10 percent will have lymphedema in one of her arms? Almost 50%. So: one of 20 Dutch women will have arm lymphedema on a certain point in her life. (I estimate this on a number of 375.000. The Netherlands have 15 million inhabitants. When half of the inhabitants are women (7.5 million), than 5 percent of them will have lymphedema (375.000).)
Then I haven't talked about lymphedema in the legs. This can occur after a hysterectomy, but also from an operation on prostate cancer: so men are involved as well. Almost every man will end up with prostate cancer. But not every man is treated for this, since it may not bother him ever.

In tropical countries with poor health care the chance that you will die of cancer is not so great. Chances are you have died from some other disease before you have the chance of dying of cancer.
But don't laugh too soon. Lymphedema has found another way to get to you. The chance your lymph system will be attacked by parasites is quite large in some tropical countries. They enter your body and destruct your lymph system. This disease is called filariasis A third of the people who have filariasis, will end up having lymphedema, elephantiasis or a genital pathology. Right now (March 2000 that is) 44 million filariasis patiënts struggle with these diseases. Go here to find out more: World Health Organisation. Health topics: Filariasis.

A patiënt with primary lymphedema wrote me interesting news. When she was a baby she lived in Congo. She wrote, there were people there, that died from lymphedema. I wrote to the World Health Organisation on August 8, 2001, to ask, if filariasis was a disease you could die from. The same day I got this reply from Eric A. Ottesen, M.D.:
"As for the 'lethality' of of filariasis, the answer is: generally none. On the other hand, a major complication of the elephantiasis and lymphoedema is infection. Not only do the infectious episodes themselves make the chronic problem worse, but they also induce bacteraemia in some individuals. Such acute bacteraemia can cause severe medical problems, including death, so it is very important, that they can be prevented or treated promptly and effectively. This point that you raise is an important one, that is not generally discussed. Certainly we have no statistics on how common or frequent such complications are."

These are all instances of secondary lymphedema. Something from outside the body has done an attack on the lymphatic system, resulting in edema: doctors taking nodes away deliberately or just destroying them during an operation, a car accident, or eery little worms or whatever they are, invading the lymph system.
You also have primary lymphedema. This means it is in the genes: a family matter. The lymphatic sytem of the person cannot adequately transport the excess lymph fluid. All of a sudden a leg becomes thick (I have the impression that it is usually a leg) and nobody knows why. The leg becomes thicker. Maybe the thickness will spread over other parts of the body.
Sometimes lymphedema is there right after birth and the patiënt spends the rest of his life, wrapped in bandages.

It wouldn't be so terrible if there was a proper treatment for this disease.
Well: there isn't.
At least: it can never be cured. You can only try to prevent your swollen limb or bodypart from getting thicker. The point is that it's not so easy to get good treatment. It seems, that Germany is the only exception to that: as far as I know, you can get manual lymphdrainage there, wherever you live.

Why I started this page

I started this page for a number of reasons.
First, because I have (secondary) lymphedema in my left arm since the beginning of 1996, after I was operated on breast cancer in December 1995 and had radiotherapy afterwards.
All the 14 lymph nodes in my left armpit were taken away. It turned out all of them were "clean". My arm was thick directly after the operation, but I discovered I had lymphedema incidentally two months after the operation.
I was warned before the operation, that there was a chance, that I might get lymphedema afterwards. It didn't feel good at the time, but I was so absolutely stricken with fear, that the only thing I wanted then, was to have the tumor out as quickly as possible. The rest I would deal with afterwards. I was told that there was a very good therapy for edema and this was a little tiny bit reassuring.
Two years after the first operation it turned out the tumor had not been taken away completely during the operation. Apparently radiotherapy hadn't helped much either. Half a year after this discovery (nowadays you have to wait that long in the Netherlands to have a cancer operation) my left breast was taken away completely. Due to bad treatment during the first two years I'm stuck with lymphedema grade II. This is hard to take, since I've done everything I could after the first operation, to make sure my lymphedema would not turn out as bad as it is now. There ís good treatment for lymphedema. The sooner you get it after you discovered you have lymphedema, the better it is. But you have to have a GOOD therapist.
Because I had to find out everything on my own and didn't had any support from the hospital, the surgeon or my family doctor (apparently they knew even less about lymphedema than I did), I had to find out the hard way: with mistakes. In life in general this may be a good way; with lymphedema it's disastrous.
Four and a half years (I was operated in December 1995) after my lymph nodes have been taken away I can safely say, that when I had known before the first operation the treatment in Holland of lymphedem is so bad, I'd never allowed them to take my lymph nodes away.
Making this site and maintaining it is a consolation for me.

Second, I feel the need to exchange experiences and ideas with other patiënts. As far as I know there is no newsgroup with this subject, so I thought: - why not make a guest book where people can leave their messages?

If there isn't, maybe the reactions in the guest book will lead to starting one.

In the meantime I found what I was looking for: The ACOR Lymphedema Support Group is for patiënts, their family, therapists, experts: everybody that is interested in lymphedema. If you go there, you can subscribe immediately.

Third, I am very frustrated with the fact that treatment is so badly organized, at least in the Netherlands, where I live. The situation in my country is this (to name just a few things): good therapists are scarce; it is very difficult to get a good fitting stocking. Many doctors don't know what lymphedema is and hardly any scientific research is done to improve the conditions or treatment of the patiënts.
Compare this with Germany where there are special clinics everywhere, where patiënts are treated the way they should.

It would be very good, if circumstances improved. With this site I want to make a contribution to make this so. Hopefully someone responsible may read this and do something for us. In the meantime we can help each other.

Where to find help

When you want to know more about this subject, I refer to the links page, where there are links to sites that dive into this matter. There are links to organisations, that can help you to find a good therapist. Most of these links are American. Maybe it's because the US are so far ahead of the rest of the world in internet and the use of computers. I hope the rest of the world will catch up soon.
Also there are books, where you can read more about lymphedema.

About the Guestbook

There are a number of questions, that arise when you have lymphedema. I raise here but a few. For instance: are you in a lot of pain? How do you manage when you may not carry heavy things anymore or use a vacuum cleaner? What do you do, if you cannot make up your own bed? Who will do the shopping? What do you do when you cannot do your work? In a number of cases you become dependent on others and you cannot take care of yourself.

There are also psychological consequences: not only are you stuck with cancer (when you have secondary lymphedema), but also will you have to take care of arm or leg for the rest of your life. You'll have to wear these ugly stockings. Your nice summer clothes do not look so nice anymore. Maybe you will have to buy larger clothes. Maybe you cannot wear nice looking clothes at all, because you got a overlarge size. Maybe you don't want to go outside, because you're ashamed of how you look like.
There is the fear that your edema will get worse, because you cannot get good treatment. Will you be stuck with elefantiasis in the end?

There may be financial consequences: do you have to buy stockings yourself because the insurance won't pay for it? and so on and so on.

I hope that many patiënts will write down their experiences or advice in the guest book. In that way they can share them with other patiënts. Some good ideas may rise from it and it is always a relief to know that there are other people, who share the same circumstances.
People, who are not patiënts, but who are concerned, are kindly requested to put in ideas and advice.

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