This is scary stuff. My great great grandmother had lymphedema that pretty much lead to her death. I also have a friend with it pretty bad.

I can't imagine what life was like for us LEers back then, before the computer-controlled pumps, the specially-designed compression wraps, "egg crate foam" and such. But then I also get the creeps thinking was life was like for us obstructive sleep apnea patients before CPAP machines. I guess if you were a member of royalty or something you could have a slave exhale into your mouth with each breath of yours while you slept to correct things, but something tells me not even that happened.

One thing that may need to be clarified is that many women have lipedema (an adipose tissue disorder) that directly causes lymphedema. I am one. There are very thin women with this disorder and, while I have never watched this show, I have been told that people on it have what is clearly undiagnosed lipedema. I wish more doctors were educated about it. https://diseasetheycallfat.lipedemaproject.org/

Exactly, Jennifer, and it is very important for docs to distinguish between the two disorders. I have a fellow DSer (in fact, my ) who, following her WLS and weight loss, was misdiagnosed by a plastic surgeon as having LE, IIRC. She eventually got a 2nd opinion, and that surgeon correctly IDed the issue as lipidema. My friend then had surgery to remove the excess tissue and everything is good. I shudder to think though what if a doc misIDed LE as lipidema, and went ahead and removed the tissue, in the process possibly removing the remainder of the lymphatic structures in that part of the body, which may still be somewhat functioning. I would guess the result would be even worse LE in that area of the body, and possibly even adjacent areas.

Reminds me of the line "Doctors bury their mistakes"...

I was very lucky to have been diagnosed with the problem right away and fortunately it all cleared up in a matter of days. I was given a leg pump and a diuretic to help process water but I am in much better shape now, though I still have it monitored.

Wow. As a long-time LE patient (lower limb, both sides) I did not know about that BMI association until now. Thanks for letting us know, Laura. Since LE often seems to have a genetic component, I wonder whether it's the case that the obesity actually CAUSES the LE condition or there is just an association sometimes between the two (being that MO often has a genetic ink, too). I found it very strange that my LE was present in my right lower leg/ankle, but no sign of it in the left at the time I had my WLS (my BMI was 61). In fact, it was so severe that I was having a chronic venous stasis ulcer issue on my shin. That issue + Diabetes = NOT a good combo, and I feared I would eventually lose that leg unless I had WLS, and quickly set it up. Several years post-WLS, LE began to develop in my left side as well, although my BMI since WLS until then was below 40. Both sides are approximately equally bad, now. So, I can't say having the WLS and reducing my weight 200+ pounds did anything to avoid it developing on my left side. I had been told about "mirroring" by one LE expert (i.e. when one side of the body develops it after the opposite side does), but other sources I have talked to dispute that theory.

LE is so "evil" .. It almost never gets any better over time (i.e. the swelling), even following reduction of body weight. If anything, it looks even MORE noticeable after weight loss, with less fat in the limbs and such. And, unless you wear very loose clothing over it, it's difficult to conceal.

Still, as disfiguring as LE is (and not exactly making us a "mate magnet"), I count my stars that it is not a life-threatening condition, as least with me. I remember a few years ago that the leader of our "Men With LE" Yahoo Group suffered with internal LE as well. The lymphatic system inside his thoracic cavity (chest) was affected, causing great increase in lymphatic fluid (due to lack of proper drainage) in that area. Eventually, the fluid would build up to the point that he would have to report to the hospital to have it needle aspirated (i.e. withdrawn via syringe) to avoid suffocating. This was a regular thing with him. I just can't imagine going through life like that and he had tremendous courage to face it.

On a positive note, although it is virtually impossible to transplant lymphatic structures (they are far too delicate) recent stem cell research has shown that therapy to be 100% effective in animal trials. In other words, new lymphatic structures form to replace the damaged ones, resulting in complete resolution of the LE condition. Now we just have to be patient until human trials begin and hope it is just as successful for us.

In the meantime, I, like many LEers, just have to content ourselves that there are three occupations we can never successfully hold (besides "model", of course): actor, spy or crook. We would always be personally identifiable by our swelling.

Laura, I was just reading the actual journal article and I get the impression the researchers' conclusions were based on just this one female patient. I still have not run across any medical literature where it has been conclusively established that MO causes LE in a patient's tissues, vs. possibly there just being a common (genetic?) association between the two. In fact, as we have read here from other member's posts, many of them report BMIs greatly in excess of 60 for a long time before they had their WLS/weight reduction, and yet they never developed LE. How can that be? It is also true that LE can exist in a patient who was never even overweight (not including patients that developed it following radiation therapy in the affected area due to cancer). In fact, "primary" LE can be found even in new-born infants. FWIW, my money is on eventually finding there is a strong genetic basis for both the obesity and the LE in a typical patient. If so, then maybe we will have a "cure" or way to prevent both some day ..

There but for the grace of God, and a bariatric surgeon, go I

i think this article is interesting. my BMI was over 50 & i had severe lymphedema in both legs, to the point that they were weeping and i had to go to wound care every week to get dressing changed on them. but i had RNY 10 months ago, have lost 150 lbs and no longer have lymphedema which is like weird. my legs do not look the same. i have tons of loose skin but i can live with this. at one point my legs were wrapped every day, i had to go to pt alot, it was a mess for yrs but weight loss surgery cured me. i know, this probably doesn't happen with everyone but it happened with me.