Together, we can make the difference in Lymphedema

Our Site Navigation

 

Home ] What is Lymphedema ] Diagnosing Lymphedema ] Breast/Chest/Truncal Lymphedema ] Axillary Web Syndrome-Cording ] Radiation-Induced Brachial Plexopathy ] Lymphedema Emergencies and Medical Care ] Reducing Your Risk of Lymphedema ] What we Want Our Healthcare Providers to Know About Lymphedema ] Essential information on Lymphedema for All Health Care Providers ] Finding a Qualified Lymphedema Therapist ] Treatment of Lymphedema ] Lymphedema Garments ] Proper Fitting of Sleeves and Gloves ] Personal Stories of Lymphedema ] How You Can Cope ] Resources ] Research Updates and Comments ] Search for Research ] Advocacy ] Appealing for Care ] FAQ'S ] Send Us Your Feedback ] [ History of Lymphedema ] Privacy Policy ] About Us ] Site Map ] Medical References ] Search Our Site ]

History of Lymphedema Page Highlights

What's with all the Butterflies?

Lymphedema and the Princess

Invisible is Easy to Forget

 

 

 

 

 

 

 

History of Lymphedema

 

WHAT'S WITH ALL THE BUTTERFLIES?

 

 

About the only good thing you can say about lymphedema is that its international symbol is the butterfly. Graceful, colorful, ephemeral! It's an emblem we all wish we could emulate as we lumber through the day with our unwieldy wrapped arm or our awkward gloves.
 
So we've been searching for the history of this symbol and, while we've uncovered some interesting theories, we still don't know whom to thank for this bright spot in our lymphedema experience. Our search continues, but in the meantime we thought you'd enjoy knowing what we've heard so far.
 
Ann Erlich over at Lymphnotes tells us that her first lymphedema therapist used the expression "gentle as a butterfly kiss" to describe the soft hand strokes of Manual Lymph Drainage (MLD). Of course if your therapist is also doing massage to deal with those tough areas of scar tissue and fibrosis, that butterfly image might flutter right out the window. But it's still a good reminder for us when we do our own self-MLD to keep our touch light and graceful.
 
Even more cheering is the meaning behind the butterfly symbolism: exquisite new life emerging from the clumsy and colorless cocoon. Hang in there! Right through the wrapping, the grief and the steep learning curve of therapy, that beauty remains within us, hidden for the moment perhaps, but ready to emerge eventually with all our dreams and passions still intact.
 
Then again – there are those days. . .

Reprinted by permission of Gary McCoy Copyright 2008

 

LYMPHEDEMA AND THE PRINCESS

With lymphedema, it sometimes seems there are no answers, only mysteries. Has it always been that way? Or were there answers once, ideas that might have been known long ago but are lost to us now, perhaps forever?
 
In a strange little book by Cornelius Stetter called "The Secret Medicine of the Pharaohs," there is a brief reference to the depiction of pathologic medical conditions in Egyptian art and hieroglyphics. He mentions one figure in particular among the thousands of relief sculptures on the South-facing façade of Queen Hatasu's temple at Deir el-Bahari, carved into the limestone wall nearly 3500 years ago.
 

 
Here the ancient artists have recorded the celebrated voyage of the Egyptian Queen to the neighboring country of Punt, in what is now coastal Somalia. She is greeted by the Prince of Punt and his wife, the Princess Ati, whom Stetter believes to be suffering from a serious disease condition: lymphedema. "Bags of flesh hang from her arms and thighs," he tells us, "and only the joints of her hands and ankles are visible." It's a description that sounds depressingly familiar.
 
Lymphedema can have many causes. In the Western world of today the most common cause is the destruction of lymph nodes and vessels due to cancer surgery and radiation. Though not an especially rare side effect of cancer treatment, it is little understood by the medical community, much less by the public. For that reason each new diagnosis has the impact of a complete surprise. The doctor is puzzled. The life-long process of keeping the swelling under control is delayed while a specially trained therapist is located and the insurance company informed, through appeals and grievances, of the treatment required for a disease they claim they never heard of.
 
Ati must have struggled with her doctors, too. In the austere view of the early Egyptians, it was the enjoyment of meals that was the source of human grief. Eating with pleasure resulted in poorly digested food, a toxic potion called "pain and slime" that flooded the body with illnesses of all kinds. With that in mind, preventive medicine in Ati's day involved the routine use of laxatives, emetics, and enemas. To these early doctors, Ati's medical condition would have seemed the result of too many meals, too richly enjoyed. But could they seriously have considered her guilty of enjoying her food? In her deformed and desperate condition, we wonder, was she capable of enjoying anything at all?
 
Like our doctors today who too often fail to diagnose lymphedema and offer little treatment and less support, we can imagine Ati's doctors considering her condition and pursing their lips in frustration. The prescription? Enemas probably, and emetics to vomit up the "pain and slime" responsible for her disfigurement. All of which must have been about as distressing as our rituals of therapy and garments. And still, nearly 4000 years later, we have no cures, no miracles – only the daily coping.
 
Having read Stetter's sorry description of Ati, we launched a hunt for a picture of the wall sculpture. We googled Deir el-Bahari, and in moments discovered the complete text of an 1891 publication on Egyptology and, amazingly, a drawing of the very relief we were looking for. There they stand, all these centuries later: the Prince of Punt presenting rich gifts to the visiting monarch, and beside him his remarkably ungainly wife, the Princess Ati.
 

 
In the traditional perspective of ancient Egyptian art, they stand with their feet and faces in profile and their torsos facing outward toward the viewer. But unlike the typically slim and shapeless limbs in other paintings and sculptures, Ati's flesh hangs in lumpy folds from her arms and legs. In procession behind her are her two sons, her daughter, a few retainers and the so-called "Great Ass," the beast appointed to carry Ati's unmanageable weight wherever she might wish to go.
 
Poor Ati. We expect slouched shoulders, lowered eyes, all the signs of humiliation we understand to be part of our condition. But to our wonder, she is not a pitiful figure at all, as she presents herself unabashedly before the glorious Queen Hatasu, acknowledged daughter of the Sun. Ati stands erect and proud, performing her princessly duties with no shadow of self-consciousness. That, as much as the dramatic folds of her flab, is what must have caught the artist's eye. It has certainly caught ours.
 

 
There is no hiding lymphedema. Either your limbs bulge like Ati's, or you begin the unending routine of daily self-massage, fussy skin care, and wrapping in layered bandages or conspicuous compression garments night and day. But for Ati, it seems, there's nothing about it she wishes to hide. She's a princess, after all. Chin up, no holding back, she takes her rightful place in the royal procession without a qualm.
 
If Ati could see us now, she would no doubt be surprised by the rhythmic massage and the mummy-like bandages that we call our lymphedema treatment, and amazed at the reduction in swelling that these methods produce. But it's clear from these few pictures we have of her that she'd be even more baffled by our efforts to camouflage our deformed arms and hands, the all-too-common attitude of shame that makes us shrink in the face of our vulnerability.
 
Maybe Ati's doctors had no answers for her, but Ati herself had an idea that gave her a quality of life we can only envy. In spite of everything – the "bags of flesh", the "Great Ass," and the nosy limestone-carving paparazzi of her day – Ati knew she was a princess, inside and out. Hopefully that lesson, carved in the limestone of Queen Hatasu's temple, isn't entirely lost on us today.

 

INVISIBLE IS EASY TO FORGET

Anything invisible is easy to forget. And unfortunately, much of the lymph system has been invisible to doctors and anatomists for eons.

As a result, the history of lymphatic research is full of forgetfulness of information surfacing briefly, only to slip out of awareness for centuries at a time.

The earliest mention of any part of the lymphatics is in the writings of Hippocrates in the 5th century BC. He made a note about the presence of the nodes in the armpits and groin, the most obvious part of the system since they can sometimes be felt below the skin. But their function remained a mystery, and apparently not a very engaging one, because for the next 300 years no further mention was made of them.

Then Herophilus of Egypt discovered the intestinal lymphatics: a mesh of thin vessels called lacteals, visible to the naked eye only immediately after eating, when they are briefly filled with fatty fluid the color of milk. To our minds today, his amazing discovery is dimmed by the grisly fact that the only way he could make this discovery was by cutting into the body of a still-living human being in this case probably a prisoner condemned to die for his crimes. Considering the cost in human suffering that this discovery involved, we would hope Herophilus's remarkable revelation would have turned the tide of forgetfulness forever.

But, no.

Another three hundred years passed before the Roman physician, Galen, rediscovered the lymph nodes. Again, the bean-sized lumps in the arm pit and groin defied explanation, so once more they slipped out of memory or at least out of any mention in the medical and scientific literature of the day. For yet another 1,400 years, silence reigned on the subject of the lymph system.

At that point the brilliant Batolomeo Eustachi (of Eustachian tube fame) identified the thoracic duct the largest lymph vessel in our bodies. It runs in front of the spine from the abdomen nearly to the shoulder, where it empties fluid back into the circulatory system at the juncture of the carotid artery and jugular vein. Certainly a hefty bit of anatomy, and one seemingly difficult to ignore. But Eustachi's report, lavishly illustrated with 47 copper plates, found its way onto a shelf in the Vatican library, where it was not discovered again for well over 100 years.

And so on through the ages. Until in the mid-1600s when, through the separate (and highly competitive) studies of anatomists in Italy, France, Denmark and Sweden, the medical field finally recognized the whole of the lymph system, including the body-wide network of nearly invisible vessels that lie just beneath our skin.

Whew!

In recent years, with the technology to visualize the maze of vessels and the flow of lymph fluid through them, a new Renaissance of lymphatic science is emerging. Still in its infancy, it struggles to gain recognition in a world of research funding battles. Investigators in the cancer field have discovered, for instance, that lymph vessels as well as blood vessels are necessary for the proliferation of tumors. The depth of penetration of lymph vessels into a tumor has even been proposed as a predictor of the likelihood of later metastasis.

Unfortunately for most of us with lymphedema, the long- standing forgetfulness of the medical community can still be a problem. The lymphatic Renaissance has not yet percolated down to the practical level of patient treatment. Doctors and nurses sometimes lack information we need about risk reduction, diagnosis, treatment and management. Insurance coverage is often minimal, and no laws exist yet to protect us or assure us of care.

The next step is ours: together we can make a difference by working for greater awareness of our needs in healthcare, the insurance industry, government and the broader community.

This time they won't forget us we're not going to let them!

References: Cellular Immunology 242 (2006) 1–8 
Immunology’s first priority dispute—An account of the 
17th-century Rudbeck–Bartholin feud 
Charles T. Ambrose 
Department of Microbiology, Immunology, and Molecular Genetics, College of Medicine, University of Kentucky, Lexington, KY 40536, USA 
Received 13 September 2006; accepted 18 September 2006

Page Last Modified 02/16/2014