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.