I'm Not Fat, I'm Deformed:
Klinefelter's Syndrome & Me

by David Brager

My father kept saying that these would be the best years of my life: The years of junior and senior high were going to be the best that life could be. Such concepts gives Stephen King the power to inhibit the dreams of cheerleaders everywhere, and for me, not much better, for I was fat.

 Had I simply been fat, it would have been tolerable. But I went beyond fat. I had breasts, and everyone I knew seemed to know it. Everyone, that is, except the doctors I went to see.

 Year after year, from when I was 12 until I was 19, every new doctor said the same thing. "You're Fat. Go on a diet." I could almost read the minds of each one as I walked in their office for the first time. 'Hello Tubby' was written on every scowl and grimace. And year after year, the chants at school of "You need a bra" took me lower and lower down the path of self-defeat.

 It was a long first year in junior college, and now I was going to go see a new doctor. Here we go again. The doctor looked at me with a concentrated expression. "You've got breasts" were his first words. I shall never forget his next line. "Those are SYMPTOMS."

 Over the course of the next hour, he called my mom and got permission to have a rare and costly test done. He then ordered that they do a karotype (chromosome count) on me, as well as a hormone level test, and a sperm count. The test took a week, and the conclusion was not obesity. It was something totally alien to me, and apparently to all the other doctors I had seen.

 

What is Klinefelter's Syndrome?

In the "perfect" human genetic body, there are 23 pairs of chromosomes in the nuclei of every gene. However, some people have extra chromosomes which cause frightening and staggering changes to them, which are most noticeable at birth. Down's Syndrome is probably the most famous.

 But in Klinefelter's Syndrome, a boy is born with male effects and female defects. What I mean is that while a child before puberty, you would never know that a Klinefelter's Syndrome boy was any different than a "real boy." That is, until puberty.

 In the course of puberty, a lot of changes happen to boys. They get muscular, grow body hair, their voice deepens, their emotions go crazy, they get more aggressive, and their genitals mature. In the course of my puberty, I got breasts and fat, had no body hair, had a high voice, stayed fairly calm, and my genitals stayed as minimally hairless and small as they ever had been.

 Here is the best description I have heard on what happened to me at puberty. A Klinefelter's Syndrome body matures to a female environment. It begins producing estrogen, and it begins saving up energy (in fat) which the body will then flush out of the system at menstruation. However, since I did not have the plumbing for a menstruation, the stored energy (fat) went nowhere (or everywhere in my system).

 In 7th grade, I weighed 120 pounds. Then, I began this mutated form of puberty. I gained 30 pounds every year. The 120 became 150 (8th Grade), then 180 (9th), 210 (10th), 240 (11th), 270 (12th), 300 (College Freshman), and then I found a doctor who diagnosed me.

 But now I must share the most staggering fact of all. Klinefelter's Syndrome is COMMON! It is so common that it is found in one out of 500 births. But if it's so common, why do so few doctors and teachers know about it? I don't know, but this page sets the course to make people more aware of the problem.

 

What's the big deal? It's only breasts and fat, right?

The major problem faced by me, and by every other Klinefelter's Syndrome victim, is that maturity and learning go from normal to very, very slow after puberty kicks into action. It takes energy to learn, and I didn't have any.

 My grades throughout Elementary School were average, and in many cases above average. But as my body began to get pumped full of Estrogen, and my muscles weakened due to a lack of Testosterone, I became lethargic and weak.

I could not keep up physically, nor could I keep up intellectually. In some things, like computers, I worked well, for I could sit in one place and learn. If I had to move around, go visit the library, do research, exercise, or make any effort at all, I was muted by a weakness that was always labeled as fat and lazy. The doctors apparently never needed to look further, for it was just easier to assume that they knew what they were doing.

Show me some proof that a hormone makes a difference:

After the discovery of my extra chromosome, I went to Seattle to see a leader in the field of genetic dysfunction. It was an even luckier day when it turned out he was on staff at a US Dept. of Social and Health Services hospital in Seattle.

 Dr. Alvin Paulson (now retired), who was assisted by Dr. Alvin Matsumoto (who was at the University of Washington Medical School, and is currently listed as on staff with Virginia Mason Hospital in Seattle), began me on my lifetime of hormone therapy. With them, I began a shot of testosterone every 14 days. And from the very first day, things began to happen.

 I came back from Seattle to my regular life. I had a job as a weekend night custodian at a restaurant. The job usually took me 8 hours a night, sometimes longer. The first night I worked, after the shots began, it took me three and a half hours. And that is how long it took every week thereafter. I actually had time to relax and do a good job instead of having to slave and do a below average job, for something was different. I had energy like I had never had before.

 My lack of self-esteem was the last thing to begin changing, and so began what would turn into 18 months of therapy with a social worker. It ended with me walking taller, and feeling a bit more intolerant towards the bullies. No one could tell me I wasn't good enough now. I just needed to prove it to the only person that needed to know: Me!

 

Know Yourself, Love Yourself, Change Yourself:

I began to find significant changes in myself. I was later told that these changes happen to others at puberty, but I was happy to have an opportunity to go through it at all. It began with a quest for discovery.

 I made a list of everything I thought I ever wanted to do, but hadn't done. This included many things that still haven't done, like skydiving, but along with others, like getting some of my writing published. I still upgrade the list from time to time.

 Once I began to see things that I felt I was proficient enough to learn, I gorged myself in knowledge. My parents had a one-hour photo machine in their real estate appraisal business for which I worked, and I dabbled in photography. I also dipped into fireworks, hypnosis, journalistic writing, and poetry. But in the end, like the friend that never leaves, I found myself in computers. Through the actions of myself, and the encouraging words of others, I gained confidence, which helped my self-esteem: Jack-of-all-trades, but master in six.

 

My Grades and My Studies:

A big problem with my mind is that it seems to have a singular focal point. I can only concentrate on one problem at a time, though the complexity of the problem can be immense. But if I am writing a document, such as I am at this moment, I have also the focus to ignore anything that is off topic, for I think in tangent logic. If something else gets my interest, it takes a lot of effort to return to the initial task and complete it, for my interest and curiosity has shifted elsewhere. To put it in better words, a friend once said that I speak in parenthesis.

 This is a major problem with the way classes exist in most schools. You take five classes, and you get fifteen hours a week of variety to keep on track. I just cannot do it. On the other hand, when a class presents itself to five days of eight hours a day, and then a test on Saturday, I excel.

 Looking back, my grades in Junior High and Senior High reflect slowness. In fact, I never used drugs in either school (I discovered Pot in College), but my GPA went 2.0, 1.9, 1.8, 1.7 and then I had my last semester, which had my one and only "A" in High School, and that was from a computer class.

 College was a bit easier for a time when they allowed Z's. If you got a Z, it didn't count against you, like an F did. So, being logical, I figured that by mid-terms, if I didn't have an A, B, or C, I would withdraw from the class, and it wouldn't hurt me. This, combined with a computer error in my favor, which the junior college told me they could or would not fix, and so I should just shut up and accept it (a 3 credit hour A was recorded as a 15 credit hour A, resulting in 60 credit points). It turned my 1.6 GPA into a 2.83 GPA, and allowed me to be accepted by Washington State University.

 Maturity is built not on age, but on experience and responsibility. When I went to WSU, I had achieved not much of either. I could not play the petty game with grades as I did in junior college, and I discovered something even more difficult. The school was built on a mountaintop, and I was in no condition to climb that many steps.

 My brother was going to WSU for his first year in college, and I wanted to go simply because he would be there. This decision was based not upon how good the school would be, or upon how well I could do, or even if there was a goal that I wanted to reach. I was going because my brother was going. Immaturity at its infancy.

 I learned a lot at WSU, but not by going to classes. I learned a lot about people. I learned a lot about strata of societies. I learned a lot about the importance of others in my life, as well as the importance of my time alone. It was a much needed break from living at home, and I enjoyed my year away, but I still had a lot to learn about life and responsibility.

 The next year, I returned home to work for the family computer business, and then enter appraising real estate. In late 1984, my parents bought a house, and I moved into it. I began learning about responsibilities, but at times, I just could not handle it. I basically learned to pay people to help me for I could not cope with the awesome responsibilities that living alone required. My maturity levels continued to increase slowly, but they took an incredible leap in 1987, when I met the first woman who ever was interested in me.

I had been shopping for a mate with children. The sperm count that was taken, all those years ago, had come up empty. Not even one sperm, dead or alive, was found in the sample. So it became clear that the easiest way to get children was to find some that already exist.

Jennifer had met me once before, and as I had bombarded her with a bunch of questions, she put me down as a pest. But when I learned that her mother was in hospital, I took her mom some books on tape to listen while there, and she called her daughter to come by "NOW!" with a tape recorder. Jen's look on her face wasn't good when she came through the door, but once we started talked, we never stopped. We've been married seven years now, having pulled her through hell, and she's still a special gal.

 

So, what's the point?

I have written this article to express the life I have lived, and what has happened to me, in a nutshell, from puberty to affinity. The key to this article is if you see someone with any of the following SYMPTOMS, you may want to see them get to a doctor that will check them for Klinefelter's Syndrome, and then take care to see that their dosages are well monitored.

 

  1. Arm span exceeds height by more that an inch.
  2. No or very little body hair and no facial hair.
  3. High voice.
  4. Minimal muscle growth in arms/legs.
  5. Weak or no energy.
  6. Small testicles.
  7. Breast Tissue (not just fat, but actually firm breasts).
  8. Low Testosterone Level.
  9. High Estrogen Level.
  10. Karotype reveals XXY sex chromosomes.
Actual Picture of XXY chromosomes

 

So, is that all?

Well, actually for me, this is the start. From here, we need to find out what can be done for the others to recognize that Klinefelter's Syndrome people are not given an easy hand, and that they may need more learning opportunities or boosts. It may take a little longer to get anywhere, but with therapy and a little help, the work should be worth it.
 

 ©1995-97 David Brager


UPDATE 1998...

Well, having returned to college in the winter of 1996, and printing a copy of the document from the National Institute of Health concerning Klinefelter's Syndrome [click here (fixed Oct., 2003)], I was finally able to get access to education support for non-hyperactive Attention Deficiency Disorder, and other mobility problems.

My IQ was tested on the Mensa test, and pulled a 120.  I have also been taking coursework at the college, to complete my Associates of Arts degree, started all those years ago, except, if counting the GPA of only the classes taken since 1996, I am averaging a 3.67GPA.  Overall, including all other grades, I have a 2.97GPA.

I am moving on to a communications degree.  I love to write , and advertising is easy...

Oh, by the way, I've met KS men up to their late 60's...so I have less to worry about dropping dead at 32...as it is, I'm 37.

Don't let yourself be afraid.  It was the most difficult decision I have had to undo.  When I was diagnosed, I was afraid I wouldn't live this long because the books on the subject, written in the 50's, said that most people died young...but as my Grandfather would say,"I'm too old to die young."


Update 1999... I just graduated from Columbia Basin College, a junior college, completing in twenty years what some students accomplish in two. I did, however, have a career in betwixt.

Washington State University...here I come...again...


Update 2003... I just graduated at a 3.49 GPA with Humanities Degree with emphasis in Communications and English (as the satellite campus of WSU to which I attended did not offer either a Communications nor an English degree). I missed honors by 1/100th of a point because I skipped my Shakespeare final (historically speaking, I am not the first person ever to do this (especially if you watch 60's sitcoms)), but I also crammed every possible class into one semester so I could graduate in Winter instead of in the Spring. I was on the WSU President's Honor Roll for four consecutive semesters prior to graduation.

So, if you have Klinefelter's Syndrome, or your kid does, don't fret. Intellect isn't impossible...you just have to learn to focus on what you want to know. If you want to learn what helped me, click here to go to my Scrypnosis.com website, which disseminates my twenty years of research in the merger of computers and psychologic.


Update March 2004...I'm going in for a Roux En Y surgery at Sacred Heart Medical Center on April 1.  No, this is not an April Fool's Joke.  My surgery is being performed by Dr. Lawrence Schrock, and from reading posts by former patients of his (see this link to ObesityHelp.com's fabulous patient review page), I am very ready to take this step to a possible new life.  I had been in fear of death at any moment for the past decade due to Klinefelter's inherent obesity issues, and now I have a chance to take my genes out for a longer ride.  If all comes through as imagined, I'll have to write a new chapter to this piece, "I'm not fat, I'm Re-Formed."  

Also, it appears that I have gone through menopause.  My estrogen level and testosterone levels were checked.  Estrogen is now at zero, and testosterone is still approaching zero, so this surgery is finally going to be supported by my metabolism, which has now stopped making the stuff that has kept me fat for so long.  

I asked Dr. Schrock to take my testicles, just to make damned sure the estrogen production doesn't return, but for the life of me, I don't think he took me seriously.  I'm just concerned about problems in the future.  Besides, whenever someone says of me, "Geez, that took balls!" I can say, "No it didn't," and show them the specimen jar.  (Actually, on thinking about it, there's an entire set of untapped comedy with someone who goes to this extreme).

As it is, I've been writing my post-surgical comedy material.  I'm trying to find a stuffed animal that looks like a baby Kangaroo.  That way, when I get that flap of skin from having lost 250 pounds, I'll pull the skin up and have a photo shot of "Me and my Joey."  Of course, in brainstorming this out, I'd like to be standing in Sydney, Australia doing this, hopefully with my wife Jennifer at my side (just to catch that pure look of embarrassment she always exhibits, as if on cue, whenever I do one of these things).

Jennifer didn't go with me when I went to the Las Vegas Comedy Festival tryouts in October.  I had been writing and re-writing my material right up to the day of the show, and when they turned on the cameras, I froze, realizing I hadn't remembered a thing because I hadn't worked the material out.  I'm excellent at improv, but I had worked this to be prop humor and tried to get it semi-scripted, and I froze because I wasn't prepared.  I won't do that again.  If you see it as filler on Comedy Central, I'm the guy who said, "Why else would we grow another one of these?" as I pulled my belly out and squashed it to make it look like a second derriere so as to conclude the joke as my "prop humor" punch line to a gag I wrote about Freud calling us fat people "Orally fixated."  I reasoned that, in using Freud's own logic, we should, instead, be noted as having "anal envy."   I could see from the expressions of Mark Allen and the others on the panel, my punch line was nothing of where they'd expected me to go, but the looks on their faces when I said "Anal Envy" related that "OH, NO!  Not another Gay joke!"-look on their faces.  They rolled their eyes up into their heads, and then, when I pulled up my shirt and down my pants, they started to pull back their necks, expecing the worse, and so, when I pushed the belly together so as to form these most excellent looking ass cheeks, the looks in their eyes were with wonder.  It took them completely by surprise, which is exactly the reward that good comedy requires.  My delivery was terrible, but my reward is that this joke would work for anyone to deliver it.

For those of you whom don't see the joke, I explained it in reverse.


*Update:  24 May 2004

Well, this story may well end up being called "Klinefelter's Syndrome:  I'm not Fat, period."  I've lost over 75 pounds since beginning weighing in February at 451 pounds US.   Kadlec Hospital was kind enough to allow me to weigh-in once a week, and when I weighed last Tuesday, I was down to 376.  Tomorrow I'll weigh in again.

I keep meeting people with Klinefelter's whom are not taking testosterone and remaining weak and immature in many ways.  Don't avoid testosterone.  It matured more than my physical form.  It matured my mind.

Also, I'm beginning to discover that every man seems to develop some form of breast tissue as they get older, so the initial facts of my story are waning in the September song.


Update:  25 July 2004

I'm now at 336.5.  If I can get down to 331 by August 1st, I'll be averaging a pound a day.  At this rate, I'll be around 200 by New Years.  We shall see.

Update:  5 September 2004

It's going slow, weight loss wise.  I'm at 328 as it's taking a hell of a lot longer time to come off now that the initial phase is done, but who cares.  Eventually, I'll be skinny. (ha!) 

If anyone plays poker at PartyPoker.com, my handle is dibrager.  If you're at ParadisePoker.com, it's scrypnosis.  I like to do improv chat, so actors, do come and play!

Update 15 November 2004

Well, it's really slow, but I'm at 313 pounds.  I've begun work on my Masters Degree from City University.  I'm currently working on a course in Management communications, but we'll see where the focus lies from here.


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