When we fall into lipedema hell where signs on the wall say
“do not expect a solution, do not expect
a cure, and do not try to escape,” we immediately need a crash course in
lipedema vernacular. Unfortunately,
because the medical profession signed off on us as incurable before one
clinical trial was completed (and if you
don’t count individual case studies, one has yet to begin), we depend, share, and believe in a knowledge base
riddled with assumptions. We do not even know what lipedema means before we
join forums where the only real advice we receive comes from shared information
collected via articles written by doctors synthesizing other articles that
evolved also from even earlier articles. We then share this blend of experience
and information orally among forum members as if it were the truth, and we pass
it on as truth as well. In this way, we who have discovered lipedema perpetuate the bad medicine that keeps us from finding solutions.
While I am not an
expert in the medical field, I am a college professor who taught research and
I am an expert on oral tradition, fact, inference and opinion. That women on
forums learn to parrot information about lipedema without questioning its
scientific basis or logical reasoning is a fact. Consequently, our forums are
often unwitting promoters of a belief system based on oral tradition rather
than a factual foundation upon which to build a cure. Sadly, as with all belief
systems, leaders emerge to keep the fixed system up and running to the
determent of visionaries who threaten change or, in our case, cures, if the
leaders cannot retain control. Groupthink always creates leaders who hand pick
their team members. The leaders’ job is to destabilize the creative process in
order to maintain a specific belief in a closed system. This is survival of the fittest. Conquerors
win and the conquered either assimilate or are driven away. It is the way of history. It is the way of
groups. It is the way of all worthwhile struggles that aim to serve humanity
with purity of motive.
Proper medical
research is very specific in its components and has nothing to do with power or
entrenchment. It is always evolving as
information brings the possibility of a
hypotheses or idea to grow the science of a disease. The logic of the medical research article
also defines the necessary components of research:
As do all forms of science, medical theories have a factual as well as a
logical basis. New information is presented in medical research articles. These
papers have three separate arguments: the argument of the hypothesis, the
argument of the experimental protocol, and the argument of the hypothesis's
judgment. These arguments may be examples of the hypothetico-deductive or
confirmational model of scientific interference. The logical form of these
arguments is informal and inductive rather than formal and deductive.
Understanding the nature of the logic of the medical research article may help
avoid erroneous conclusions.
(Velanovich, L. www.ncbi.nlm.nih.gov/pubmed/8259532
So far, lipedema
research is a two-legged stool trying to strike a theoretical balance without a
third leg - the argument of the experimental protocol (laboratory
research). Without the experimental
protocol, researchers have no means of self-correcting or making progress
towards a cure. Every doctor I read,
unfortunately, has looked at lipedema and hypothesized astraddle the two-legged
stool of incurable. This hypothetical judgment, the third argument of medical
reasoning, is reached without empirical research and has been passed from one
medical generation to the next based primarily on case studies that confused
and interposed Dercum’s disease (1892) and lipedema for half a century before
Allen and Hines differentiated lipedema from Dercum’s disease in 1941 and that
conclusion determined by one patient history.
The medical community has thus had 211 years littered with relentless
misogyny to come up with something besides fat to describe lipedema. “Do not expect a solution, do not expect a
cure, and do not try to escape.”
Before we
take their collective lack of interest personally I would remind you of the
history of the hysterectomy.
Vaginal hysterectomy dates back to ancient
times. The procedure was performed by Soranus of Ephesus 120 years after the
birth of Christ, and the many reports of its use in the middle ages were nearly
always for the extirpation of an inverted uterus and the patients rarely
survived. The early hysterectomies were fraught with hazard and the patients
usually died of haemorrhage, peritonitis, and exhaustion. Early procedures were
performed without anaesthesia with a mortality of about 70%, mainly due to
sepsis from leaving a long ligature to encourage the drainage of pus. Thomas
Keith from Scotland realized the danger of this practice and merely cauterized
the cervical stump and allowed it to fall internally, thereby bringing the
mortality down to about 8%. (C Hutton.
Hysterectomy: A Historical Perspective. www.ncbi.nlm.nih.gov/pubmed/915593300)
Truly, lipedema is in its infancy. We are at the start of our campaign and most
of us will not reach the land of itty-bitty skirts and knee high boots in this
lifetime. Our place in the history of lipedema is likely to be judged on how well
we engage the medical community in our struggle, not on how well we harangue
doctors to produce immediate solutions they don’t have. Rather, this first generation will be known
for its success or failure by its ability to create a sisterhood with one
unified goal: a lipedema cure. No
leaders. No followers. No ego. No names
but one. YANA.
George Milbery Gould (1848-1922) was a physician, lexicographer,
and the first
president of the Association of Medical Librarians (now the Medical Library
Association. In
1903, he addressed the issue of medical discoveries. He wrote in the
preface of an abstract titled Medical Discoveries by the
Non-Medical:
I have been struck by the fact that the majority of
great medical discoveries, truths and instruments, have not been made
completely and suddenly, but have been led up to by preliminary and progressive
steps, and that the layman has so often made these discoveries prior to the
medical practitioner. This great medical truth is, indeed, but an illustration
of the general law that all professional progress, in whatever branch of
study, is somehow or other a result of stimulus from without. There is so much
interest, and there are so many lessons to be drawn from such observations in
medical history, that I have in late years kept minutes of this class of
truths, from which I make the following selections.
(Journal
of American Medical Association. 903;XL(22):1477- 1487.
doi:10.1001/jama.1903.92490220001001)
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