Lymphedema Patient Education - Editorial

We who have lymphedema are usually met with either indifference or ignorance of our condition by the medical community. From the discussions in so many of the online lymphedema support groups, this would outwardly appear as one of the biggest obstacles to achieving both a correct diagnosis and treatment of the condition.

I want to share a post I made in our Advocates for Lymphedema group, this past week in reference to this:

Comment from Anne, one of our members:

Maybe we need to go back to the very basic education and left people know that LE is treated in the same way whether it's primary or secondary. For instance, lower leg LE requires MLD and bandaging or compression garb whetherit'sprimary or secondary. Anne

My response:

And that the result is going to be the same if untreated...same end....same complications. There are also so many challenges too. Not only is education for the medical community critical, but the larger community as well...including those who make the laws.

But, I am beginning to think patient education may well be the greatest challenge of them all. There are so many many sites on the internet with credible, valuable information.

Organizations like the NLN, LRF, Lymph Canada, Lymph Assoc of Australia on and on that work as hard as they can to bring this information to the patients.Yet, I have noticed that the amount of misinformation has absolutely exploded...and what has happened????

Patients are drawn to that instead of to the solid information. At some point we as patients have to have enough self value and discernment to demand proof and evidence for what we read....and stop devouring info that in the long run is going to be damaging for us.

I know that sometimes it seems I go overboard about this. Maybe I do...but lymphedema is something that I have had to experience every single, solitaryday of my life. And when the curtains falls, it probably won't be from lymphoma...it will be from what is happening with the hereditary lymphedema.

So for me it is serious serious business. A quickie example and then I'll get off my soap box :-)

The very best document available any where on travel precuations with lymphedema is from the National Lymphedema Network....and to their credit, they have updated it a well based on new information.

Yet...circulating now among the online support groups is a document ontravel precautions specifically for chronic venous insufficiency. The sad thing is that patients are gobbling this up and thinking it will help them with lymphedema. What's up with things like that????????

Those precautions for CVI will spell serious trouble for lymphedema patients...so why are we reading and believing that document while ignoring the NLN's document....I honestly truely don't understand this.

So how do we crack this nut??

How do we get patients to care enough about themselves to want peer reviewed, credible information?

OK....I'm done....time for another round of morning coffee.

Pat

There are other glaring examples from just the last couple weeks.

In one group a woman posts that she uses the "ancient Mayan Abdominal massage." Why? because she claims it helps circulation and helps "organ alignment."

In yet another group, someone says we need to have a vegetarian diet because there are toxins and bacteria that immediately go to the lymphatics of the neck when we eat certain foods and meats...even before we swallow the food.

Then there was a post on the 7 stages of lymphedema....ironically this list is an old staging system for lymphatic filiarsis and has nothing to do with either primary lymphedema or secondary lymphedem as we experience it in the industrialized nations.

And in the same group that brough us the air travel misinformation and the staging info another one that states in stage zero, the lymphatics are dilated. Wrong, it depends on the lymphedema involved as to whether or not the lymphatics are dilated or constricted.

I could go on and on, but I am sure you get the jest. There simply is no substitution for evidence based medicine and scientific information.

This kind of proaganda is put out through the internet by patients who act as self-appointed "gurus." and seldom is it questioned.

Then we wonder why the medical community looks down on and frowns upon their patients participating in these groups.

If we do not, as lymphedema patients, do not care enough abou at ourselves to seek out, lay hold of and use verified, clinically tested information how do we expect the medical community to care about us, to respect us, or to take us seriously?