The Behinninh
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Eugene Tiffany
Feb 20, 2008, 12:34:43 PM2/20/08
to Engelmann's Syndrome
Hello.I am the person from which all modern understanding of
Englemanns Disease (as it was spelt back then) began. WHEN I was a
small child my mother noticed I cried when I walked... so... took me
to doctor after doctor to find out why. IT was not till I was 18 the
condition was finally correctly diagnosed. This was 1959. I was
attending the Orthopedic Clinic at the University of Washington
Medical Center in Seattle... and coincidentally, there appeared
another young man with the same symptoms... extreme pain when
young... and he was also experiencing considerable distortion of the
leg bones, and he was thin too... and it was discovered that we had a
common ancestor... back in Montana. It was guessed that the condition
must be Engelmanns Disease. At the time, there were only 21 known
cases of the condition in the world. .. making it then one of the
rarest diseases in existence.The genetics department at the
University of Washington Medical Center gained a substantial research
grant... and sought out my family tree... on my father's side. AT THE
time... the condition was diagnosable only by x-ray... and was the
only condition that was. SO my living family tree were all x-rayed...
to the extent that it could be. FORTUNATELY, I had a great aunt,
Mildred Bressie... who knew a great deal about the family.. which
stemmed from the back woods country of Montana... in Whitefish,.where
the Tiffany Family dwelt. AND so fellows from the University of
Washington's genetic department would ferry (an hour ride) from
Seattle to Bremerton where Mildred lived... and they interviewed
her... extensively. The result of their investigation was that more
than 20 more cases of Engelmanns Disease was identified... in my
distant family tree. All of which had priorly been misdiagnosed...
usually as Polio. I underwent experimental surgery to correct my very
distorted legs. I walked in a crouch... and could not fully stand up.
My feet aimed half outward... while my knees half pointed toward each
other. So... walking was considerably difficult... and tiresome. I
had weak muscles... and little fat .. so was quite skinny. Thin. Hard
to keep warm in the cold and rainy weather of the Puget Sound area.
At the age of 18. I was given powerful drugs to stop my growth...as
at the time I was growing taller fast... and it was believed I could
grow to seven feet tall. Understand, in those days there was next to
nothing much understood about Engelmanns Disease. It took longer a
year to affect a change to my legs alignment. I underwent surgery
twice... both legs each time. First beliow the knee... then above...
where the bones were cut through many times and sectioned back
together so that my feet would be more properly relocated. The upshot
was miraculous... after a months of painful therapy... I could
walk... nearly normal..,.. and I reentered school. I had been removed
from scholl at the age of 11... as my doctors at the Childrens
Orthopedic Hospital (now know as the Childrens' Hospital) in Seattle,
had decided that attending school was to difficult from me. So I then
stayed home. I had no home-schooling... as the school district had no
funding for it. So... I mainly engaged in my crafts projects. The
Librarians at the public library in Bremerton some how learned of my
situation... and sent the Bookmobile to my house. The Bookmobile
librarians quickly learned what books I liked and would seach the
main library for hand-picked out stuff for me. I didn't read
fiction... but books on science, philosophy, religion... anything I
could learn something from., Some years later an I.Q. test disclosed
that mine was 147, which is at the 2% level of humanity... and in
spite of the fact that in the feild of mathematics, I am an absolute
idiot. I can't think when I try to work mathematical problems out. IF
my math ability were only "normal" then my I.Q. would be...
astronomical, eh? But of course, these days... I am in no way limited
in math. I use a calculator... and my computer. No problem! I was so
so hungry for knowledge as a child. After a year at home I gained a
home tutor... who would bring records from the public library and a
portable record player from the school... and we would often just sit
there in my room listening to classical music. He would also bring me
his college text books to study. I was about 14 at the time. This was
thime of best education by any instructor save for when I was in
first two years at school. Mr. Hanson was the man's name.Will skip
that part of my story about my first years of scooling... and I
skipped the 1st grade... for now.
AFTER the corrective surgery on my legs.... I went back to school...
two years behid the class that I had originally been in... I entered
aty my Junior year... so the children I had known were gone. IT wasa
major new learning experience beingback in school. I had never
learned to study... as students need to do. BUT I did okay. I was the
artist for the Year Book, in final two years there... with the last
winning a major state award. My theme was, Water! I had to talk the
staff into my chosen theme. That was quite a feat... for an introvert
like me. I did seascapes... and rain images... and waves for the
yearbook. It turned out really good.. The cover was a graphic symbol
of a wave design. Looking back with an educated eye, it is amazing
how well I did then with no formal education... though I had won many
ribbons for my art at the Kitsap County Fair... and was interviewed
(complete with big picture) by a reporter from the Bremerton Sun
Newspaper., as a child.. in relationship to what all i could do in
relation to what all i was up against. AFTER High School I could have
gone to the University of Washington on a scholarship (I was 12th in
my class out of over 200 students) but had been convinced by others
that I was a good artist... and should go to Art School.. so... did.
I went to the Burnley School of Professional Art, in Seattle... which
is now known as the Art Institute of Seattle... and is now a vastly
superior school. Though, Burnley, in its day... was the best. I was
aZ competitive scholarship winner there. AFTER art school.. I worked
at the Boeing Airplane Company in the Motion Picture Unit as a
storyboard artist, and film editor... making movies... such as one
called, Numerical Control. This was about the computers that Boeing
used... back in the days before there was anything called an IBM PC.
Unfortunately... I suddenly began to feel real bad at times during my
art school days. And in the 3rd year at Boeing I began to lose my
hearing. Fast. The doctors at the U of W....sent me to California...
where I underwent surgery to restore my hearing, by the real Dr.
House... who later developed the Cochlear Implant hearing device...
for which I became a candidate twice. BUT the necessary tests showed
that it would not work for me... to restore my hearing...
unfortunately. BUT... very fortunate was that House had discovered
that there was developing a huge pressure on my brain (which
certainly explained the severe depression I had fallen into... and,
otherwise, inexplicably, at the height of my shrived-for career I
underwent immediate surgery that expanded the right side of my
head... and two weeks later, the left side. My hat size grew from
SMALL to EXTRA-LARGE. Man... once again... I could THINK! Oh, them
were the days... the weirdest days any one can possibly imagine...
and a long story by itself, alone. It was like being on LSD 24 hours
a day... for weeks non-stop... oh, for moths... even for over a year.
I kid you not. BUT.. what a great education concerning alternate
states of consciousness... all those years were... from five years
beginning priorly before the head surgery... and then for years more.
I had many many full blown Out of the Body Experiences... and could
sometimes do it intentionally. Man... I really miss doing that. I
have not experienced the phenomena for years, now... but I learned a
great deal about the subject matter at the time, and plan to publish
books about the true nature of Reality... and the Universe... in due
time. These days, most religions are way off base.. Most religions
are founded by peeps without a clue. Fools. And they mislead
people... and throw their followers way off the True Path. Damn their
hides. But that's enough about that. These days I am using a wheel
chair to scoot around my house in... just started using it.
BESIDES... and having crooked legs once again.... and no sense of
balance... I have severe arthritis of the knees... so is difficult
and painful to walk around... not to mention dangerous. I want to
make what use I have of my legs last... so the wheelchair usage is a
good thing. It will help. I need knee-joint replacement surgery...
but it was deemed not possible... as the changes of angulations of
the leg bones make it impossible to line up the replacement joint
szproperly. SO MUST preserve what locomotion I have... by staying off
my legs as much as I can.
OH.... I typed all the above with just two fingers... as I also have
no twist to my wrist... so cannot make my palms face a keyboard.
This is a consequence of the Engelmanns Disease affecting my arms.
One more thing. I also have no smile. I should play Poker... as I
have an absolutely expressionless face. This occured along with the
hearing lossss... when the nerves running through the Mastoid bone
just behind the ear got crushed.
One more important story here. A younger distant relative of mine...
became a doctor... named, now, Dr. Stephanie Wallace.. She decided on
doing Englemanns Disease research as her thesis. She was instrumental
in the development of a blood test to identify the "bad gene"... and
showed up at a 4th of July family picnic one year, flying up from
California and drew blood from everyone (but a cousin who had been a
Marine... but was too scared of needles to allow the doctor to have a
sample of his blood... the fool). As a result of Stephanie's
research, the defective gene was identified... and it was learned who
in the family has the disease... and who does not. My father does,
as a "CARRIER"... but my brother does not... so his children and
their children... and the further linage on... are now known to be
safe.
With me... the buck stops here. I don't have any children... and
won't. It would pain me all again to see a child of mine suffering as
I once did. Physical pain of my own I can deal with... but... not
emotional pain. That I know i can't handle.
I plan to write an autobiography, in due time... where my story about
Engelmanns Disease will just be a small part of it. I used to like to
say that I am the most incredible, amazing, person I ever met...
which is an amazing thing for a Card Carying Introvert to say. This
was always meant half as a joke... while being 100% the case. I have
the most incredible story to tell. I really should get at it, eh? But
I've been busy. Just made a new dinning table... that seats four to
eight... with extension leaves. It is designed to look like an
antique from a Maharaja's Palace back in ancient India. It has
jewels... and gold... and lots of dark wood... and round black legs
like elephant legs. It turned out well. It's not just a table... but
also a skulpture... a work of art... and will eventually be worth a
king's fortune. Maybe. BUT... there's also my books I should finish
and publish.The world won't be the same once they get out. I gurantee
it.
Englemanns Disease (as it was spelt back then) began. WHEN I was a
small child my mother noticed I cried when I walked... so... took me
to doctor after doctor to find out why. IT was not till I was 18 the
condition was finally correctly diagnosed. This was 1959. I was
attending the Orthopedic Clinic at the University of Washington
Medical Center in Seattle... and coincidentally, there appeared
another young man with the same symptoms... extreme pain when
young... and he was also experiencing considerable distortion of the
leg bones, and he was thin too... and it was discovered that we had a
common ancestor... back in Montana. It was guessed that the condition
must be Engelmanns Disease. At the time, there were only 21 known
cases of the condition in the world. .. making it then one of the
rarest diseases in existence.The genetics department at the
University of Washington Medical Center gained a substantial research
grant... and sought out my family tree... on my father's side. AT THE
time... the condition was diagnosable only by x-ray... and was the
only condition that was. SO my living family tree were all x-rayed...
to the extent that it could be. FORTUNATELY, I had a great aunt,
Mildred Bressie... who knew a great deal about the family.. which
stemmed from the back woods country of Montana... in Whitefish,.where
the Tiffany Family dwelt. AND so fellows from the University of
Washington's genetic department would ferry (an hour ride) from
Seattle to Bremerton where Mildred lived... and they interviewed
her... extensively. The result of their investigation was that more
than 20 more cases of Engelmanns Disease was identified... in my
distant family tree. All of which had priorly been misdiagnosed...
usually as Polio. I underwent experimental surgery to correct my very
distorted legs. I walked in a crouch... and could not fully stand up.
My feet aimed half outward... while my knees half pointed toward each
other. So... walking was considerably difficult... and tiresome. I
had weak muscles... and little fat .. so was quite skinny. Thin. Hard
to keep warm in the cold and rainy weather of the Puget Sound area.
At the age of 18. I was given powerful drugs to stop my growth...as
at the time I was growing taller fast... and it was believed I could
grow to seven feet tall. Understand, in those days there was next to
nothing much understood about Engelmanns Disease. It took longer a
year to affect a change to my legs alignment. I underwent surgery
twice... both legs each time. First beliow the knee... then above...
where the bones were cut through many times and sectioned back
together so that my feet would be more properly relocated. The upshot
was miraculous... after a months of painful therapy... I could
walk... nearly normal..,.. and I reentered school. I had been removed
from scholl at the age of 11... as my doctors at the Childrens
Orthopedic Hospital (now know as the Childrens' Hospital) in Seattle,
had decided that attending school was to difficult from me. So I then
stayed home. I had no home-schooling... as the school district had no
funding for it. So... I mainly engaged in my crafts projects. The
Librarians at the public library in Bremerton some how learned of my
situation... and sent the Bookmobile to my house. The Bookmobile
librarians quickly learned what books I liked and would seach the
main library for hand-picked out stuff for me. I didn't read
fiction... but books on science, philosophy, religion... anything I
could learn something from., Some years later an I.Q. test disclosed
that mine was 147, which is at the 2% level of humanity... and in
spite of the fact that in the feild of mathematics, I am an absolute
idiot. I can't think when I try to work mathematical problems out. IF
my math ability were only "normal" then my I.Q. would be...
astronomical, eh? But of course, these days... I am in no way limited
in math. I use a calculator... and my computer. No problem! I was so
so hungry for knowledge as a child. After a year at home I gained a
home tutor... who would bring records from the public library and a
portable record player from the school... and we would often just sit
there in my room listening to classical music. He would also bring me
his college text books to study. I was about 14 at the time. This was
thime of best education by any instructor save for when I was in
first two years at school. Mr. Hanson was the man's name.Will skip
that part of my story about my first years of scooling... and I
skipped the 1st grade... for now.
AFTER the corrective surgery on my legs.... I went back to school...
two years behid the class that I had originally been in... I entered
aty my Junior year... so the children I had known were gone. IT wasa
major new learning experience beingback in school. I had never
learned to study... as students need to do. BUT I did okay. I was the
artist for the Year Book, in final two years there... with the last
winning a major state award. My theme was, Water! I had to talk the
staff into my chosen theme. That was quite a feat... for an introvert
like me. I did seascapes... and rain images... and waves for the
yearbook. It turned out really good.. The cover was a graphic symbol
of a wave design. Looking back with an educated eye, it is amazing
how well I did then with no formal education... though I had won many
ribbons for my art at the Kitsap County Fair... and was interviewed
(complete with big picture) by a reporter from the Bremerton Sun
Newspaper., as a child.. in relationship to what all i could do in
relation to what all i was up against. AFTER High School I could have
gone to the University of Washington on a scholarship (I was 12th in
my class out of over 200 students) but had been convinced by others
that I was a good artist... and should go to Art School.. so... did.
I went to the Burnley School of Professional Art, in Seattle... which
is now known as the Art Institute of Seattle... and is now a vastly
superior school. Though, Burnley, in its day... was the best. I was
aZ competitive scholarship winner there. AFTER art school.. I worked
at the Boeing Airplane Company in the Motion Picture Unit as a
storyboard artist, and film editor... making movies... such as one
called, Numerical Control. This was about the computers that Boeing
used... back in the days before there was anything called an IBM PC.
Unfortunately... I suddenly began to feel real bad at times during my
art school days. And in the 3rd year at Boeing I began to lose my
hearing. Fast. The doctors at the U of W....sent me to California...
where I underwent surgery to restore my hearing, by the real Dr.
House... who later developed the Cochlear Implant hearing device...
for which I became a candidate twice. BUT the necessary tests showed
that it would not work for me... to restore my hearing...
unfortunately. BUT... very fortunate was that House had discovered
that there was developing a huge pressure on my brain (which
certainly explained the severe depression I had fallen into... and,
otherwise, inexplicably, at the height of my shrived-for career I
underwent immediate surgery that expanded the right side of my
head... and two weeks later, the left side. My hat size grew from
SMALL to EXTRA-LARGE. Man... once again... I could THINK! Oh, them
were the days... the weirdest days any one can possibly imagine...
and a long story by itself, alone. It was like being on LSD 24 hours
a day... for weeks non-stop... oh, for moths... even for over a year.
I kid you not. BUT.. what a great education concerning alternate
states of consciousness... all those years were... from five years
beginning priorly before the head surgery... and then for years more.
I had many many full blown Out of the Body Experiences... and could
sometimes do it intentionally. Man... I really miss doing that. I
have not experienced the phenomena for years, now... but I learned a
great deal about the subject matter at the time, and plan to publish
books about the true nature of Reality... and the Universe... in due
time. These days, most religions are way off base.. Most religions
are founded by peeps without a clue. Fools. And they mislead
people... and throw their followers way off the True Path. Damn their
hides. But that's enough about that. These days I am using a wheel
chair to scoot around my house in... just started using it.
BESIDES... and having crooked legs once again.... and no sense of
balance... I have severe arthritis of the knees... so is difficult
and painful to walk around... not to mention dangerous. I want to
make what use I have of my legs last... so the wheelchair usage is a
good thing. It will help. I need knee-joint replacement surgery...
but it was deemed not possible... as the changes of angulations of
the leg bones make it impossible to line up the replacement joint
szproperly. SO MUST preserve what locomotion I have... by staying off
my legs as much as I can.
OH.... I typed all the above with just two fingers... as I also have
no twist to my wrist... so cannot make my palms face a keyboard.
This is a consequence of the Engelmanns Disease affecting my arms.
One more thing. I also have no smile. I should play Poker... as I
have an absolutely expressionless face. This occured along with the
hearing lossss... when the nerves running through the Mastoid bone
just behind the ear got crushed.
One more important story here. A younger distant relative of mine...
became a doctor... named, now, Dr. Stephanie Wallace.. She decided on
doing Englemanns Disease research as her thesis. She was instrumental
in the development of a blood test to identify the "bad gene"... and
showed up at a 4th of July family picnic one year, flying up from
California and drew blood from everyone (but a cousin who had been a
Marine... but was too scared of needles to allow the doctor to have a
sample of his blood... the fool). As a result of Stephanie's
research, the defective gene was identified... and it was learned who
in the family has the disease... and who does not. My father does,
as a "CARRIER"... but my brother does not... so his children and
their children... and the further linage on... are now known to be
safe.
With me... the buck stops here. I don't have any children... and
won't. It would pain me all again to see a child of mine suffering as
I once did. Physical pain of my own I can deal with... but... not
emotional pain. That I know i can't handle.
I plan to write an autobiography, in due time... where my story about
Engelmanns Disease will just be a small part of it. I used to like to
say that I am the most incredible, amazing, person I ever met...
which is an amazing thing for a Card Carying Introvert to say. This
was always meant half as a joke... while being 100% the case. I have
the most incredible story to tell. I really should get at it, eh? But
I've been busy. Just made a new dinning table... that seats four to
eight... with extension leaves. It is designed to look like an
antique from a Maharaja's Palace back in ancient India. It has
jewels... and gold... and lots of dark wood... and round black legs
like elephant legs. It turned out well. It's not just a table... but
also a skulpture... a work of art... and will eventually be worth a
king's fortune. Maybe. BUT... there's also my books I should finish
and publish.The world won't be the same once they get out. I gurantee
it.
Eugene Tiffany
Feb 20, 2008, 12:38:17 PM2/20/08
to Engelmann's Syndrome
Looks like line-noise messed up the topic tittle Should be, The
Beginning
Beginning
Niki
Feb 21, 2008, 11:01:30 AM2/21/08
to Engelmann's Syndrome
Hello Eugene!
It is great to meet you and hear about your story. I will definaly
purchase your book when you
get it published!!! I really wish that you would take some time to
post or email me more specific details
about your Emglemanns. Details on the symptoms, pain, medications and
things to that nature. As I
also love to learn more about this disease, I am dealing with. I am
unsure as to where my 'gene' came from
and I have children, so I would love to know more about this. Also is
your aunt still researching
this disease and maybe those of us in this group could be of help to
her as well?
It is truely great to hear your story and I hope that you continue to
post and write to each of us, as we are all
facing the same disease. I am so glad that you have had such success
in you life and you are such a
positive influence to all of us.
Thank you,
Niki
> ...
>
> read more »
It is great to meet you and hear about your story. I will definaly
purchase your book when you
get it published!!! I really wish that you would take some time to
post or email me more specific details
about your Emglemanns. Details on the symptoms, pain, medications and
things to that nature. As I
also love to learn more about this disease, I am dealing with. I am
unsure as to where my 'gene' came from
and I have children, so I would love to know more about this. Also is
your aunt still researching
this disease and maybe those of us in this group could be of help to
her as well?
It is truely great to hear your story and I hope that you continue to
post and write to each of us, as we are all
facing the same disease. I am so glad that you have had such success
in you life and you are such a
positive influence to all of us.
Thank you,
Niki
>
> read more »
Eugene Tiffany
Feb 21, 2008, 4:26:40 PM2/21/08
to Engelmann's Syndrome
Hello, Niki
In response to your questions. The Englmanns Disease pain I
experienced only occurred for me as a young child. And it was
unbelievable intense... and continuous. And I have a younger
Extroverted brother... who was jealous of the special attention
allotted me... which was actually close to nill. AND he found he could
move a wooden chair up next to mine... and proceed to jump off of it
onto a relatively flimsy wooden floor. The result of his doing that he
had found was that I would cry and cry. The physical shock waves that
went through the floor and up my chair legs would cause the pain in my
legs to be like explosions of pain throughout my body and mind. And my
parents understood nothing about it... and my father (who gave me the
disease) would yell at me... not at my brother, "SHUT UP! HE NEVER
TOUCHED YOU!" But at night... my caring mother would give me a hot
water bottle to place between my legs... which helped a lot. I never
was given any drugs for pain. FOR which I am, actually greatly glad...
as it would have just left me heavily doped up... all the time... in a
state of total stupor. AND MY MIND was my most important faculty.
AFTER I stopped growing, the pain mostly went away. I do experience
discomfort from weather changes. Am in the Pacific Northwest... a cold
damp country. I believe I would be far better off in Arizona.
AS a young man, after studying science, electronics, and biology... on
my own, I came to the understanding that the pain I had experienced
was caused by a pizio-electrical effect... where if pressure is
applied to a crystal, it can release a small measure of electrical
current. I had learned that bone has a crystalline structure... a it
is pure mineral. Calcium. Not all crystals will experience this
effect, but many do. AND since Englemanns Disease causes some parts of
the bone to become extremely hard, while other parts are made, extra-
extremely hard, this causes the bones to twist as they grow... and a
constant pressure on them occurs. I believed this pressure was
generating electricity... which was leaking off into the nervous
system... and shooting up to the brain... and registering not simply
as a "pain," but every other sensation in an acute form, all being set
off at once and the same time. A few years ago, my distant cousin, Dr.
Wallace told me that my idea has been proven to be the case. A doctor
in California had the same idea, and proved it to be so... in a lab. I
don't know what his name is. Good for him; I say... but I claim the
title as the "discoverer" of this incredible phenomena... and I did
tell Dr. Wallace about it before this was determined by the California
Doctor.
Niki ... how YOU got the Engelmanns Disease is fairly simple in
explanation. One of your parents is a "carrier." And one of that
person's parents is a "carrier"...and so on. BOTH my father and his
father were carriers... and I believe so was one of the parents beyond
that. A carrier of the Engelmanns Disease may experience no
symptoms... no pain. And have no crooked legs.
In relation to my distant East Coast relatives... stemming from a
common Montana one, there occurred case after case of Engelmanns
Disease... down through the line. Much much pain occurred in that
family's linage... unlike in mine... It was this situation that
prompted young Dr. Wallace (who looked really really young for her
age... like a High school student) to research the disease... and
develop the blood test.... through finding the "bad gene."
I HIGHLY recommend that every brother or sister of everyone, here, who
has the Englmanns Disease, to have the special blood test taken... and
done by someone who knows what they are doing, what's to be looked
for. IF it is determined that they are a carrier... they should think
a lot about whether they should have children or not. Frankly...
anyone who knows they are a carrier and goes ahead and has a child...
is being unbelievably irresponsible. AND IF they already have
children... then... those children should have the blood test done...
and so on.
The person to contact would be, Dr. Stephanie Wallace... who I believe
is now in Seattle... at the Childrens Hospital. Tell her, Eugene
Tiffany sent you. She can advise.
The main thing to understand is that there is no greater pain than
that which is caused by Englemanns Disease. Nothing can ever come
close to it. And it is because, the condition generates electric
current into the nerves.
I was visited by Stephanies grandmother once some years ago. And she
told me that she believed what I had experienced was of a much greater
pain than she had known. So... it is possible to have the condition
and not experience it at its worst. AND if anyone here is experiencing
it at its worst... I recommend you study auto-suggestion
techniques.... you CAN control your pain through this means.
In response to your questions. The Englmanns Disease pain I
experienced only occurred for me as a young child. And it was
unbelievable intense... and continuous. And I have a younger
Extroverted brother... who was jealous of the special attention
allotted me... which was actually close to nill. AND he found he could
move a wooden chair up next to mine... and proceed to jump off of it
onto a relatively flimsy wooden floor. The result of his doing that he
had found was that I would cry and cry. The physical shock waves that
went through the floor and up my chair legs would cause the pain in my
legs to be like explosions of pain throughout my body and mind. And my
parents understood nothing about it... and my father (who gave me the
disease) would yell at me... not at my brother, "SHUT UP! HE NEVER
TOUCHED YOU!" But at night... my caring mother would give me a hot
water bottle to place between my legs... which helped a lot. I never
was given any drugs for pain. FOR which I am, actually greatly glad...
as it would have just left me heavily doped up... all the time... in a
state of total stupor. AND MY MIND was my most important faculty.
AFTER I stopped growing, the pain mostly went away. I do experience
discomfort from weather changes. Am in the Pacific Northwest... a cold
damp country. I believe I would be far better off in Arizona.
AS a young man, after studying science, electronics, and biology... on
my own, I came to the understanding that the pain I had experienced
was caused by a pizio-electrical effect... where if pressure is
applied to a crystal, it can release a small measure of electrical
current. I had learned that bone has a crystalline structure... a it
is pure mineral. Calcium. Not all crystals will experience this
effect, but many do. AND since Englemanns Disease causes some parts of
the bone to become extremely hard, while other parts are made, extra-
extremely hard, this causes the bones to twist as they grow... and a
constant pressure on them occurs. I believed this pressure was
generating electricity... which was leaking off into the nervous
system... and shooting up to the brain... and registering not simply
as a "pain," but every other sensation in an acute form, all being set
off at once and the same time. A few years ago, my distant cousin, Dr.
Wallace told me that my idea has been proven to be the case. A doctor
in California had the same idea, and proved it to be so... in a lab. I
don't know what his name is. Good for him; I say... but I claim the
title as the "discoverer" of this incredible phenomena... and I did
tell Dr. Wallace about it before this was determined by the California
Doctor.
Niki ... how YOU got the Engelmanns Disease is fairly simple in
explanation. One of your parents is a "carrier." And one of that
person's parents is a "carrier"...and so on. BOTH my father and his
father were carriers... and I believe so was one of the parents beyond
that. A carrier of the Engelmanns Disease may experience no
symptoms... no pain. And have no crooked legs.
In relation to my distant East Coast relatives... stemming from a
common Montana one, there occurred case after case of Engelmanns
Disease... down through the line. Much much pain occurred in that
family's linage... unlike in mine... It was this situation that
prompted young Dr. Wallace (who looked really really young for her
age... like a High school student) to research the disease... and
develop the blood test.... through finding the "bad gene."
I HIGHLY recommend that every brother or sister of everyone, here, who
has the Englmanns Disease, to have the special blood test taken... and
done by someone who knows what they are doing, what's to be looked
for. IF it is determined that they are a carrier... they should think
a lot about whether they should have children or not. Frankly...
anyone who knows they are a carrier and goes ahead and has a child...
is being unbelievably irresponsible. AND IF they already have
children... then... those children should have the blood test done...
and so on.
The person to contact would be, Dr. Stephanie Wallace... who I believe
is now in Seattle... at the Childrens Hospital. Tell her, Eugene
Tiffany sent you. She can advise.
The main thing to understand is that there is no greater pain than
that which is caused by Englemanns Disease. Nothing can ever come
close to it. And it is because, the condition generates electric
current into the nerves.
I was visited by Stephanies grandmother once some years ago. And she
told me that she believed what I had experienced was of a much greater
pain than she had known. So... it is possible to have the condition
and not experience it at its worst. AND if anyone here is experiencing
it at its worst... I recommend you study auto-suggestion
techniques.... you CAN control your pain through this means.
Message has been deleted
packyman
Apr 4, 2008, 1:07:52 PM4/4/08
to Engelmann's Syndrome
hello eugene,
your story and mine are quite similar, but quite different, too. i'm
an artist/graphic designer. my grandfather was a carpenter and my
father was artistic as well, so it seems to run in the family. but it
was my grandmother who passed on the CED gene in my family. she had 12
children and lived well into her 80's. seriously, i think it was due
to her having so many children, because most if not all women with CED
experience a 'remission' of sorts while pregnant. but it was my father
who was the main study case for engelmann's at the U of M Minnesota
back in the 60's and 70's, and possibly earlier than that.
i haven't heard of your cousin the doctor, but i know for a fact it
was Dr. Jacqueline T. Hecht who isolated/discovered the gene that
causes CED. she's at the U of T, Houston, in Pediatric medicine. she's
won numerous awards for her DNA research. she wrote a paper about it
in 2000 or 2001, so do a search for her name and i bet you'll find it.
but maybe your cousin worked with Dr. Hecht somehow. Dr. Hecht started
her research in the mid '90s with 3 of my cousins in san antonio, and
the research took off from there. many, many of my cousins found out
that they too have CED when they didn't know they had it. they have
much less serious cases of it, though.
this is my first post to this site, but i used to be much more active
on the Tribe site. over the past 1-2 years i've had worsening health
and haven't kept in touch with my CED friends. i hope to change that,
soon. i'll fill you all in on what crazy happenings have taken over my
life. i could probably write a book, too... from my experiences over
the last 4-6 months alone. keep an eye open for my next post. it'll be
long, but it'll explain why i haven't been keeping in touch with
everyone.
until then,
Patrick D. Dentinger
your story and mine are quite similar, but quite different, too. i'm
an artist/graphic designer. my grandfather was a carpenter and my
father was artistic as well, so it seems to run in the family. but it
was my grandmother who passed on the CED gene in my family. she had 12
children and lived well into her 80's. seriously, i think it was due
to her having so many children, because most if not all women with CED
experience a 'remission' of sorts while pregnant. but it was my father
who was the main study case for engelmann's at the U of M Minnesota
back in the 60's and 70's, and possibly earlier than that.
i haven't heard of your cousin the doctor, but i know for a fact it
was Dr. Jacqueline T. Hecht who isolated/discovered the gene that
causes CED. she's at the U of T, Houston, in Pediatric medicine. she's
won numerous awards for her DNA research. she wrote a paper about it
in 2000 or 2001, so do a search for her name and i bet you'll find it.
but maybe your cousin worked with Dr. Hecht somehow. Dr. Hecht started
her research in the mid '90s with 3 of my cousins in san antonio, and
the research took off from there. many, many of my cousins found out
that they too have CED when they didn't know they had it. they have
much less serious cases of it, though.
this is my first post to this site, but i used to be much more active
on the Tribe site. over the past 1-2 years i've had worsening health
and haven't kept in touch with my CED friends. i hope to change that,
soon. i'll fill you all in on what crazy happenings have taken over my
life. i could probably write a book, too... from my experiences over
the last 4-6 months alone. keep an eye open for my next post. it'll be
long, but it'll explain why i haven't been keeping in touch with
everyone.
until then,
Patrick D. Dentinger
Lauren
Apr 5, 2008, 7:49:22 AM4/5/08
to Engelmann's Syndrome
Welcome Back Patrick!
It's great to hear from you and I hope you are well. I look forward to
catching up with you over the next few weeks. Take care mate.
Cheers,
Loz
It's great to hear from you and I hope you are well. I look forward to
catching up with you over the next few weeks. Take care mate.
Cheers,
Loz
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