"PERSONAL TESTIMONIAL"
(Editorial Piece)
by Marylin Faith Rumph
Originally written for
an overseas organization in 1997; completely revised September 2002 for this Web
site. They gave it the title: "Personal Testimonial" because the piece
was written by me as an individual, not as someone representing a group. I have substantially
re-written it, leaving out most of the personal descriptions of my disease, since
those can be read elsewhere on this Web site ("About Faith") or on other
Web sites from links on this one. I have focused on my beliefs about labeling of
supplements and food products, and GE and EMS - a topic most today don't want to
talk about much anymore, though it remains unresolved. In my opinion, it's one of
the reasons that EMS has been ignored increasingly over the years: Scientists who
often look to GE to help diseases and "improve" farming and foods, don't
want to admit that GE might have contributed to causing a disease.
I believe
that EMS may be the world's first disease associated with genetic engineering. I
truly believe in my heart that EMS was caused, not just by decreased filtration procedures
at Showa Denko, but that their incorporation of GE initiated the entire process leading
to this novel and sometimes fatal illness. However, the situation is a complex one
hard to explain and fully understand by laypersons. Too few medical professionals
even have adequate knowledge about the disease or what happened prior to EMS emerging
on the scene. In fact, most medical professionals have to think hard to recall what
EMS is, unless they've had patients or done research.
What I know for sure
is that SDKK did something to their product. I got sick, and others got sick. I know
they used genetic engineering and did not report it to the FDA. They just wanted
to make more and more LT and make it faster to sell to consumers, mostly in America.
Information gleaned for lawsuits revealed this attitude to be prevalent prior to
EMS occurring.
I believe that all genetically engineered products should be
clearly labeled so that consumers know the truth; however, this seems to be an unpopular
opinion among scientists and the government in America, though not in many other
nations. If the full facts were explained to most people in the United States, I
am positive that most Americans would also want to know whether or not products they
purchase contain genetically engineered elements.
I am not opposed to all
genetic engineering because I realize that good may come from some applications of
GE. But I think it also has the potential to cause much harm and that consumers have
the right to know what's been done to the things they eat. My opinion is that a government
should do all that it can to safeguard the health of its citizens - not to do so
would be like a parent allowing a child or children to be injured when an injury
might have been avoided. FDA, in my opinion, let us down, those of us with EMS, and
Congress did, also, insofar as they had allowed lobbyists of the supplement industry
to influence them to lessen the power of FDA to take firm action against products
like L-tryptophan. FDA gave up in the late 1970s trying to get LT off the market
after several unsuccessful legal moves. Legislation of Congress further weakened
FDA's ability to act. Now, we live in a world where, only if a supplement causes
harm, can FDA ban it and rid us of it.
Canada removed LT from their shelves
around 1985. You can get LT in Canada as a prescription drug. If Canada did that,
preventing their citizens from getting EMS, why could not the United States? (I imagine
you know the answer.) Actually, only about 10 cases of EMS are recognized in Canada,
and most of those got the LT from America. There is also a case of EMS from 5-hydroxy-tryptophan
or 5-HTP, but that is a somewhat different matter. So, what's the real story of EMS?
The
true story of EMS and tryptophan is probably not fully known except to a few persons;
however, we know enough to guess that SDKK didn't want others to learn too much about
their goings-on at their manufacturing plant since they destroyed their GE'd bacteria
used to make the impure LT. We are told "they" destroyed it. Maybe - however-
some is left somewhere that someone saved. I am told that scientists hate to destroy
all of something, just as scientists in the USA and in Russia still have samples
of the Small Pox virus. The disease was eradicated, but they kept the virus. What
if some of that deadly brew still exists despite what we have been told? How are
we to know now? We can't unless someone tells us about it at some point in time.
So, we can't know for sure if any is left, and can only repeat what we were told:
It was all destroyed.
Speaking personally about my disease, I am disabled
due to EMS, as are many others. Among my problems are tight skin, damaged muscles,
fatigue, chronic pan, and scarred skin. There are other problems too numerous to
mention except to say I have been diagnosed with several other chronic diseases since
onset of EMS. I can only walk and stand for short periods of time. In short, there
is hardly a part of my body from my eyes to my toes that has not been adversely affected
by having EMS. Sometimes I have good days and maybe a good week or two a few times
a year. Most of the time it's a matter of having a good day or two in a week, or
some good hours in a day, if I am lucky. I never imagined when young that the amount
of pain I live with daily, especially early in the day, was possible. One cannot
imagine how awful pain is until one has it day after day. The pain of childbirth
is transient, and in the vast majority of women these days, ends with a healthy
baby. Soon, the pain has been forgotten with the joy of having a baby. When one has
an operation there is pain, but that usually recedes and goes away in time: Sometimes
the operation is for the purpose of alleviating pain of some type.
Millions
of people live with chronic pain in America and around the world. But millions of
others do not understand, including - too often - their doctors, friends and relatives,
who may think they are lazy, exaggerating, seeking attention or drugs, etc. People
are more sensitive too often to the pain of their pets than to the pain of their
neighbors or loved ones.
A friend of mine died of EMS complications in 1996
after having been stricken during The Epidemic following ingestion of only 13 pills.
She never walked again once getting sick. But once upon a time, she'd been the dean
of a nursing school. She died because EMS gradually destroyed her breathing muscles,
affecting her heart and lungs. That was a hard case. It also dispels the myth that
"only those who used L-tryptophan for a long time or took a lot of it"
got sick. I did not abuse LT. I did not take more of it than recommended. I was just
unfortunate to get one or more bottles of contaminated tryptophan.
There are
persons with EMS from teenagers to persons in their 80s. Last year a cousin of mine
died who had EMS. She did not get EMS until she was elderly, about 75 or 76. So most
of her life had been lived, we can say, free of EMS. When Elizabeth died, she was
88 years old, probably one of the oldest surviving persons at that time with diagnosed
EMS. Of course, she was not a severe case to begin with, or she'd never have lived.
(I have a moderate case.) But she had EMS. I like to think that she left a legacy:
"I lived with EMS to be 88 and lived with dignity. Maybe you got the disease
when you were much younger, but you, too, can live with dignity and do your best
to live out your days with this disease as best you can." I would add this:
We must be brave but we must not forget what happened, nor let history forget.
And,
may we get some help from NIH and others to further research our disease.
The Pianist Repents at Dawn
Scriabin, impassioned and noted
for mystic allure
stares down from his First Etude score; brazenly sure
the
page corner leans below the brown piano rack,
and lustfully stretches toward C-sharps's
black.
Brahms, more reserved, broods reflectively;
his sighs, deep and
pensive, float poignantly
to me. In pre-dawn's disguise, the lamp and he
cast
smiles back and forth wistfully.
He had a lover's quarrel with the world,
Frost said,
and I've had one with great composers instead.
Now that I see
my touch is so missed,
I'll embrace them again in flesh-to-key bliss.
----Copyright
1991 Marylin Faith Rumph
To those with EMS or people who
used LT but could not get an EMS diagnosis: Write to me if you want to do a column,
editorial, your "EMS Story" or something else. We can discuss what
I am interested in publishing here. I will also publish a few well-written poems
from time to time which are *about* EMS. I will not publish anything
which uses profanity, vulgarities, or names others and demeans or libels them.
faith_rumph@yahoo.com
Write to me with ideas and suggestions, or questions.