History of Lymphedema
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
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
Then again – there are those days.
Reprinted by permission of Gary McCoy Copyright
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
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
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.
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
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
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
of information surfacing briefly, only to slip out of awareness
for centuries at a time.
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
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
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.
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.
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
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
This time they won't forget us
we're not going to let them!
Immunology 242 (2006) 1–8
priority dispute—An account of the
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