LIVING WITH KLINEFELTER SYNDROME


Please note, my updated story below is very long and in-depth.  I highly recommend printing it out to read it offline.  It is a very long read, and there are a lot of important details in here including some suggestions from the many people who have read the original one posted here on this page.  If you have any suggestions or questions about anything within the story, please don't hesitate to message me about them.



My name is Stefan and I was diagnosed with Klinefelter Syndrome (KS), also known as XXY in February 1996 at the age of 25. Throughout my life from birth through age 25, my parents knew I had learning, social, some anger and behavioral issues, but couldnít put their finger on it until I received my Klinefelter Syndrome diagnosis.


When I was diagnosed, I was initially angry that it took so long for a medical professional to realize that they needed to do genetic testing to determine that I had this condition.  I mean, I grew up in Baltimore, Maryland, home of Johns Hopkins Hospital, a world-renowned hospital facility. 

Putting a name to a condition was finally the answer to many of my lifelong struggles.  It put a face on my experiences that had a significant effect on my life.

The day I finally received my diagnosis is a day I will never forget.  My primary care physician is the one who diagnosed me.  I had been seeing this doctor for the previous seven years and until I presented with chest pains after extreme physical exercise (shoveling snow!), he didnít look at or consider my testicles to be of an abnormal size.  Upon determining that, he sent me for a semen analysis, then a buccal smear and finally a blood karyotype to determine definitively that I have definitively had Klinefelter Syndrome.  It showed Klinefelter Syndrome 47XXY.  Although I have since learned that I am actually a variant of Klinefelter Syndrome called mosaic, where after review of my chromosomal makeup 5% of my cells are 46XY and 95% are 47XXY, thereby making my Klinefelter Syndrome signature 46XY/47XXY. I was apparently his first diagnosed patient in over 20 years of practice and when he called me on the telephone to inform me of my diagnosis and setup an appointment in his office, he told me I donít know much about this condition, but you are sterile and cannot father children and I donít know anything else.  He then hung up the phone and I sat there staring into space contemplating what he had just said!  Looking back on that day now, it makes me angry that a doctor would tell a patient that over the telephone without any other supporting information.

I did follow up with that diagnosing physician and had hoped he would have done some research before seeing me.  But, unfortunately, he had not.  He just told me to drop my pants so he could give me a monthly testosterone injection, and I declined indicating that I had scheduled an appointment with a top adult endocrinologist at Johns Hopkins Hospital and I wanted to get a recommendation from a specialist.

The specialist I saw was extremely knowledgeable and gave me and my parents lots of information and I started to understand how things started to add up to how my life began to come together with this new diagnosis.  The endocrinologist felt like I should start on the Androderm patch, which was new and gave me a daily dosage of testosterone.  She felt that would be my best bet initially and to see how that went.  So, within a month of diagnosis, I was starting testosterone therapy.  The boost of testosterone felt amazing, though the Androderm patches were terrible and large and caused itching and irritation and rashes to form on my skin.  After a week or two, I contacted my endocrinologist and told her that I needed to try a different method because I couldnít continue using these Androderm patches.  They were horrible!  She scheduled an appointment for the following week for me to meet with her nurse so that I could be taught how to give an Intramuscular (IM) testosterone injection.  She taught me very quickly and it seemed pretty easy and definitely something I could manage to do at home.  I also did these injections every 2 weeks, so I didnít have to worry about the patch irritation or practically waxing various parts of my body each day when ripping off these patches!

Initially my parents didnít really want me to tell many people after my diagnosis occurred.  Though, being that I was diagnosed a month before my 26th birthday, I really needed to consider what was best for me going forward.  I initially honored their wishes and didnít let on too many people about it.  But within a month of my diagnosis, I realized that I needed support for myself and needed to talk to others about the condition and how it affected me ó at least from what I knew early on.

The internet, as it is today in 2018, really didnít exist in February of 1996 when I was diagnosed.  There was one website with some information, and that was the website of Klinefelter Syndrome & Associates (KS&A), an organization supporting and helping to educate those who had received a diagnosis of this condition.  Though through the website, I found the name of someone Iíve called a friend for the past 22 years.  Dave Wright, a support group leader for the Silver Spring, Maryland Klinefelter Syndrome Support Group.  Unfortunately, my diagnosis occurred literally a couple of days after he had held a support group meeting.  But his telephone numbers for both home and work were on the website and I took the opportunity to contact him at work.  Being that I was very shy and quiet at that time of my life, I was nervous about calling a stranger and talking with him about such a rarely heard of condition, Klinefelter Syndrome.  But my friend, though, was warm and welcoming and made me feel ďnormalĒ and answered my questions and helped me to understand Klinefelter Syndrome or KS or XXY the best I could.  He and I spent about 45 minutes on the telephone and Iíve always looked back on that conversation as the gateway to my becoming an expert in regards to my diagnosis.

I then started to learn about and get a grasp on the condition. It was actually truly a relief and blessing that my diagnosed finally happened and that I could put a name to something I had been living with since birth. I fully understand now at age 48 how much of a relief this diagnosis has been. Though when my diagnosis occurred, it was difficult and required a period of adjustment to deal with what this really meant and what effect it would have on my life going forward.


Now in 2018 as I rewrite ďmy storyĒ it is easier to test for and receive a diagnosis of XXY or Klinefelter Syndrome.  However, there are still many boys/men throughout the world who arenít being diagnosed, and it is very frustrating!  It is still considered a rare genetic condition even though it occurs in roughly 1 in 500 live male births.

Though Klinefelter Syndrome or XXY is more known now than it was at the time of my diagnosis, there is still much to learn and teach others.  I determined very quickly that the best way to help myself deal with having the condition is to help other people who have it and spread the word that having this condition really isnít all that bad.

My goals since diagnosis have always been to educate, educate, and educate!  Getting the word out and making myself available and known, as well as the organizations know is what I continually try to do.  My goals are to help those just finding out to not feel alone and to cope with their diagnosis of this rare genetic condition.


Since this is a rewrite of ďmy storyĒ, I would like to start by telling you about my life before my diagnosis occurred. I was born in March of 1970 to very loving and wonderful parents. I was a happy baby, at least indicated by my parents and other family members. I was quiet and reserved and generally behaved well and did what I was asked to do. Being quiet and reserved seemed to follow me throughout my early childhood, teens and even into adulthood, at least before my Klinefelter Syndrome diagnosis occurred. I had a lot of trouble making friends and I do believe that was due in part to my shyness. Once I made friends, I wouldnít easily let them go. I would hold on to friendships long after they had broken apart. Though I did find it a lot easier to make friends with either people several years older or younger than I was.

I grew up with many learning differences throughout my life.  I graduated high school, barely, with a 2.02 GPA, which was barely above the state minimum of 2.0.  Though I was frequently called stupid by my teachers and other peers throughout elementary, middle and high school, I wasnít a dumb kid.  I was smart in my own way and I found that a lot of my learning issues were because of the way I was taught.  I believe looking back that the teachers just didnít know what to do for me or how to help me be successful. 

I realize the period of time between birth and the end of high school is usually 18 years, though for me it was 19 years as I was held back in a private school called Boysí Latin, which had to be one of my worst schooling decisions. Iíll get to that in a moment.

My parents placed me in a relatively small private school called Friends School in Baltimore, Maryland.  I started there in the three-year-old preschool class along with about a dozen other kids, some of whom I am still friends with today. I made some lifelong friends, at Friends School!  Imagine that!  As I got into middle school there, I began to feel awkward and that my learning differences were holding me back, not allowing me to work or understand or learn at the same pace as my peers.  I felt awkward in sports which were required during at least, I believe, two of the three seasons.  I did pretty well in soccer and even scored a lone goal in one of the games during my seventh-grade season.  I played primarily on defense, but somehow got a shot on a goal and it went in.  One of my proud sports moments.  I tried lacrosse, but didnít like the physical and violent nature of the sport.  I tried wrestling, but didnít have much upper body strength Ė something I learned is part of having Klinefelter Syndrome and something that didnít appear until I started testosterone therapy years later.  I was terrible at basketball and still am.  I eventually played softball in my eighth-grade spring sport season and enjoyed it and could really hit the ball far.  My eighth-grade year was the first year of the co-ed softball team and where we played other area schools.  I did well with the bat, but tended to be afraid the ball would hit me and didnít do nearly as well in the outfield.

I enjoyed my time at Friends School, but was totally crushed midway through eighth-grade when my parents were told that I could no longer remain at the school because I could no longer compete in such a competitive private school and that my learning differences kept me from staying with peers I had gotten to know for up to eleven years. I was devastated and didnít know how to handle being told I had to leave.

My parents took me to visit several schools in the area, three private schools and a public high school.  It was the thing at that time to visit schools in advance before choosing to go there.  Two of the three private schools were specifically geared towards students with learning problems.  However, one of the schools was a place for those who had behavior problems.  I couldnít wait to leave that one within the first half-hour of being dropped off.  I wasnít ready to go to a public high school in Baltimore City.  It was rough and I felt immature and overwhelmed there.  The last school I visited was Boysí Latin, an all-boys private school in Baltimore, Maryland. When I started there and took the placement tests, I was deficient in numerous areas and was told I would have to take summer school classes.  I was not the only one in summer school and its where I met my first classmate who would be in my grade.  I was also told that I would need to repeat the eighth-grade and not move on to ninth-grade, as I anticipated doing. I was a little upset, but knowing that I knew no one at this school I figured it was okay.

Summer school was rough and long, especially after just completing my eighth-grade year at Friends!  I was ill-prepared for taking Latin and some of the remedial classes I took that summer of 1984! I was in summer school for the last two weeks of June and all of July, as well as the first week of August.  Then I was allowed to take the remainder of the summer off before starting my eighth-grade repeat year at Boysí Latin.  This school required all boys attend wearing a jacket, tie, button down shirt and dress shoes.  Imagine changing for gym and then having to get back dressed into your tie and formalwear for school.  It was certainly a change from what I wore at Friends.

Starting eighth-grade again at this new school was a mistake.  For starters, I was the new kid, the only new kid coming in in eighth-grade.  I was the new kid from a rival private school in the area and everyone seemed to know it.  I already had difficulty making friends, but coming here from a rival private school made it even more difficult. I felt awkward, different and just cried many nights wishing I hadnít had to make a choice to come to Boysí Latin. Why did Friendsí School make me leave?  Why couldnít they allow me to stay and work with my learning differences? Why did I have to leave lifelong friends?  In 1984 I couldnít understand why my life had taken such a difficult and drastic turn and how was I going to survive.

I spent much of my second eighth-grade year alone.  I didnít make any friends until nearly halfway through the year.  I felt awkward in gym, awkward changing clothes in front of my peers, awkward having to take a shower in a shower room with my peers.  It was just something that I wished I had never had to do.  I did make friends in the second half of that year and was manager of the baseball team.  I tried out to be a member of the team, but I got cut and was the manager instead.  My teammates and the coaches respected the job I did as team manager and treated me like I was part of the group.  At the end of the year softball game, I showed my athletic ability with some pop in my bat with two home runs.

Though my year at Boysí Latin wasnít anything to write home about and I wished I could have stayed at Friendsí School, it certainly toughened me up and I learned a lot about how much adversity I could handle even being unhappy during that school year. 

After that year, my parents decided moving to Baltimore County would be a good option and thus began my first years at a public school, starting ninth-grade at Pikesville High School in Pikesville, Maryland. Here I knew that I would not be the only ďnew kidĒ on the first day. The majority of my peers came in from the middle school, but others came in from elsewhere, so I wasnít the only one! Though I still felt awkward, I did know a couple of students my first day from various activities and through friends of my parents who had students also going into ninth grade at Pikesville High with me.  Public school for me was a whole lot different than private school.  On the surface, it didnít seem as competitive, although later during my four years here I found that there was a very competitive side of the class of í89! Public school, a large class of over 250 students, allowed me to blend in somewhat, or, as I liked to call it, I disappeared.  Being quiet and shy, I could just disappear and get by and pass without much fanfare or existence.  I wasnít getting called on much in class and I just faded into the background.  However, I was still picked on by my peers and deemed an easy target by upper grade students.

In one particular incident in Freshman year, after lunch before going to my next class I used the boysí bathroom near the cafeteria.  This bathroom had one entrance/exit.  When I walked in some older students were smoking and using the bathroom.  I was shy and very quiet and just went about my business.  They left and when I heard them leave I heard a click when the door shut.  Not thinking about what that was, I finished up and went to leave to go to class and the door was locked.  Somehow those students locked me in the bathroom and there was no way for me to get out.  This was way before the days of cell phones as it was the Fall of 1985, and I was stuck and getting more scared by the minute.  What was I to do to get out of here and what did I do to deserve this?!?  I banged on the door and yelled loudly, let me out of here Iím locked in.  Eventually a janitor came and unlocked the door with his keys.  He asked me what happened and I told him some seniors locked me in when they left.  I didnít know who they were and I was nervous to tell them names even if I had known.  When I was finally let out, a group of students were outside and I felt embarrassed that I had been locked in and that someone had to come let me out.

For quite a while after that ďbathroomĒ incident, I was fearful of going into a bathroom where there was a door that could be locked.  I avoided that particular bathroom for the remainder of my time in high school Ė even when I had classes right across from it Ė I would find another restroom in the school to go to. Many did not have an entry door, so there was no way I could be locked in.  I certainly believe some of the fear from this incident affected me for many years and in many ways, some of which I did not understand until my diagnosis of Klinefelter Syndrome occurred and I realized how irrational that fear just was.

By senior year I had a number of friends in the class of Ď89.  I had crushes on some of my classmates, but was too shy to tell any of them.  I had not experienced a ďrealĒ kiss throughout my entire four years in high school.  Finally, in my senior year I realized I had certain friends throughout my four years who had been in the majority of my classes with me.  In both junior and senior years, I had friends, I had some fun, and I was allowed to take a weight lifting class only for seniors.  I didnít build up any more muscle, which was odd and I didnít understand until I was diagnosed with Klinefelter Syndrome.  I didnít realize my decreased level of testosterone was affecting my ability to build muscle and upper body strength.  I had the option senior year being part of the co-operative education program where I went to classes in the morning and worked in the afternoon working for a specific employer that provided a program where students are mentored for work and learn new skills and abilities.  I worked for the Pikesville Chamber of Commerce and had an eye-opening experience.  For the most part, I loved the job in the afternoon and it allowed for a nice split day and start to jumping into the working world.  I enjoyed not having to spend the whole day at school and could really get involved in something else.  I was still very quiet and shy and was scared to do certain tasks, and eventually had to figure out how to do them even though I was frightened.  I didnít want to tell my manager that I was afraid, I wanted to be an adult and just do it.  I certainly took my lumps and tried not to show my fear, but deep down I was terrified!

In regards to my shyness, I often would try to make myself disappear or become invisible or totally blend in with everyone else.  I was so shy, in my third semester at community college, I took an absence when called up to complete the morning questions on the board.  Even though I knew all of the answers to the questions, I was too terrified to get up in front of everyone in the class and write on the board.  Mind you, this was a two-and-a-half-hour class which occurred twice a week, and I took an absence.  This wasnít a huge class, there were maybe 40 students in the class, but even after three weeks, the professor didnít know our names and faces yet. That was certainly the most prominent of example, but there were many more just like that throughout my life before my diagnosis occurred.

I also had a very bad temper that would usually occur from storing too many angry events without slowly letting them go and instead letting them build up like a volcano and explode with huge amounts of steam and lava spewing everywhere. I was usually uncontrollable while spewing angry, foul-mouthed words and things that I didnít truly mean. I would normally apologize to those who I yelled at within minutes of spewing that anger. I would sometimes fly into rages for no apparent reason, though I understand now that it was the intense pressure of events that were just building up that I didnít let go. One minute I would be very calm and the next minute I was picking fights and damaging property.

My anger definitely contributed to the downfall of my marriage, some years later.  In my mid-40ís I voluntarily signed up for Anger Management which was offered free as a part of my health insurance.  For those of you who have seen the Adam Sandler movie ďAnger ManagementĒ, the six-week evening class was nothing like the movie. I was the only one in the class who wasnít court ordered to attend, but nonetheless it was an eye-opening course which allowed me to learn principles of why I was getting so angry and what it was doing to me and those around me. It certainly was not a cure-all for all of my anger issues and required a lot of work outside of the class and even more so today as I continue to work on it. I followed it up with another class called Dialectical Behavior Therapy (DBT) that followed up on similar principles. The combination of continued work on thinking before reacting, taking a deep breath and also some medication to help stabilize my moods have significantly helped me with my anger throughout my life. It is something that I will continue to have to be aware of and work to not let it take control of me.

My parents knew there was something about my anger, temper, being quiet and shy and just not achieving the same as my peers at the same time that wasnít right.  They had no idea what was occurring until I received my KS/XXY diagnosis in February 1996.

Throughout my life and primarily before my diagnosis, I saw many psychologists, psychiatrists, therapists and physicians to try to determine why I was having so many issues in school with learning, socially, behaviorally and with extensive mood changes.  They could not determine anything specific while testing me for everything from A-Z. I had testing as early as 1973 through the late 1980ís.  Klinefelter Syndrome was not even considered since it was so rare and unheard of at that time.  Even now, as I write my story in 2018, KS/XXY still isnít a mainstream condition that you might equate with Autism, Down Syndrome, Cancer, or the many other well-known medical conditions. Throughout all of the testing, the only thing that was of significance was the variety of learning differences that I had which created many problems during my schooling years.

My learning differences consisted of reading comprehension, abstract thinking, understanding of non-visual materials, word retrieval, some slight memory retrieval, auditory processing and the taking of standardized testing. I was meant to feel inferior and stupid by some of my teachers in elementary, middle and high school. I was bullied by classmates and peers.  I was very immature for my age and got myself into some dangerous situations because I wanted friends and would do whatever someone asked me to do, if they would just be my friend. My self-esteem was low, I felt confused and didnít know how to handle myself well in those schooling years.  In second grade, I was told by my primary teacher that I would never amount to anything.  In seventh grade, a psychologist told me that I would probably live at home forever, would never have a good job and would never be successful in life.  Imagine being told that as a vulnerable young boy and teenager!

After being told those things, I was convinced that I just needed to prove everyone wrong who said I wouldn't be successful in life and wouldn't be able to do the things by other peers or anyone else. It has been a very redeeming quality of my life to be able to show those downers that I could make it in this world despite being told I was basically a loser.

Some of these learning differences still affect me today, even as a 48-year-old adult. All of these learning differences affect me in one way or another, but during my first year of college, I decided that I needed to figure out a way to compensate for my learning differences to be able to survive life and move forward and be successful.

I spent a lot of time during my first few years of college figuring out how to fix my learning issues and not having them be a way of stopping me from succeeding and living my life. Eventually, I realized why do I need to fix my deficits, I can just work around them and focus on the positives and strengths.  So, I had to figure out what my strengths were and how I would plan on focusing on my best facets of learning.  What I found as being strengths that work for me, may not work for others as its truly figuring out your learning style and modifying it for yourself.  For me, I must focus on visualization, repetition and hands-on learning.  Sounds easy, right?

I found that if I was shown something, even only once, I could continue to do it.  I could adapt that style to whatever I was doing.  Repetition, meaning lots of reading and especially re-reading.  Re-reading something three times allows me to fully grasp the concepts and meaning and truly understand.  I canít say it was easy throughout college re-reading hundreds of pages between classes, but it was certainly easier than the alternative, failing! Visualization to me is a concrete way of thinking.  I do not do well with abstract thinking and concepts.  If I canít visualize what I need to do, whether it was for school or working in my adult life, I would struggle and have to spend a lot of time thinking about what I am being asked to do.  A number of things in my adult life would not be possible without those learning strategies that I developed to figure out a way going forward with my life.

During my six-year journey throughout college, which began in the fall of 1989 at a community college outside of Baltimore, Maryland, I experienced many things.  I worked almost full time while in community college.  I was still undiagnosed with Klinefelter Syndrome at this time and I still struggled socially, emotionally, had anger issues and didnít feel I was as mature as my peers around me.  I spent three years at this particular college graduating with an A.S. in Business Administration in May 1992.  I took many classes in lots of different areas to fulfill lots of required classes, but also took classes that were of interest to me and experimenting with other types of courses.  For instance, the class where I took an absence to not have to verbally answer questions was my required college Science course, Meteorology.  It was taught by a local meteorologist and was a really great class.  I had decent grades, not outstanding, but better than high school.  I was working to perfect my learning strategy methods and that allowed me to experiment with different situations and scenarios.

While at the community college, I saw a college career recruiting specialist to try and figure out the best place for me to transfer to after completing my Associates degree.  Remember, this was before the internet existed, so going online to find colleges that best fit my skills and what I wanted to do for the rest of my life just wasnít as easy to find or easily determined.  So, through this specialist and a variety of career tests, we determined a list of 10 colleges to consider. Through library research and knowing that I wanted to go to New England to finish up my Bachelorís Degree, I focused on schools up there and then researched in the library and reviewing the materials the career specialist had prepared for me. I planned a trip with my parents to visit seven schools, the majority being small colleges I had not heard of previously.

I ended up choosing Colby-Sawyer College, in Central New Hampshire.  It was a small 600 student Liberal Arts college when I attended from September 1992 through May 1995.  It has more than doubled in size since then. Colby-Sawyer College was an all-womenís college through 1990.  I would not have been able to attend coming right out of high school.  I chose this college because it had all of the academic aspects I was looking for, but also plenty of social activities for students on campus and in the area.  I was looking for a small school and not looking to be invisible here.  I was looking to grow socially, emotionally and educationally.  I found what I was looking for and made lifelong friends, and even though I donít see them regularly in person, the internet and social media has made it much easier to keep in touch.  I learned a lot about myself and who I was and perfected my learning strategies and really became a functioning member of society. Colby-Sawyer College was 500 miles from where I grew up and it was my first experience leaving home and being primarily on my own. I graduated in May 1995 with dual Bachelor of Science degrees in Business Administration and Sports Management.  Though my educational goal changed from my first attending Colby-Sawyer College and graduating from here, I got a great education and have applied it to my lifelong career. During my time at Colby-Sawyer College, I achieved some unbelievable educational accomplishments.  I made Deanís list for the first time ever.  I had a 4.0 semester, only one, but thatís an accomplishment for me.  I achieved honors in several semesters. I never had one semester where my GPA was below a 3.0 and though it wasnít a storybook ending, I graduated within 2/100th of point from graduating cum laude. So much for only getting 680 on my SATs.

My first year out of college was a confusing year, a year where I was trying to figure out where I belonged in life after college. It was during this year that I received my Klinefelter Syndrome diagnosis.

Life after receiving my diagnosis was initially one where I was angry and frustrated and confused as to why it took so long for it to happen.  I was angry at the world for a week or two because I was wondering, why me?!?  I was engaged at the time of my diagnosis.  We had been together for three years and we were planning to have children and a family and be together forever.  Based on past friendships, I continued to try and make things work even though I had now received my Klinefelter Syndrome diagnosis.  We were together on and off for another couple of years, but by 1998, I broke off our relationship citing a need to meet and see other people.

Gradually after the first couple of weeks, I began to accept the diagnosis and move forward and learn about the condition and look into myself and see what would have helped me and been different if a diagnosis had occurred earlier, say, in my mid-teens or earlier.  I started taking testosterone therapy about 4-6 weeks after my diagnosis occurred.  Because I was my primary care physicianís first diagnosis in his 20 years of practice and because he was only looking at my testicles to determine that I had two of them, I opted to find a specialist to continue my care.  My primary doctor wasnít really looking to determine the size of my testicles until I came in with other symptoms and he wanted to actually check the size of them more thoroughly, which then led to other tests and my diagnosis.  I then decided it was better for me to see an expert about the condition for a more thorough evaluation.

I scheduled an appointment at Johns Hopkins with a top endocrinologist who had been studying this condition for a number of years and had even worked with Dr. Harry Klinefelter before he passed away.  This endocrinologist was extremely thorough and explained all about the condition and limited treatment options.  We decided together for me to start on the Androderm patches, which were large, circular patches that delivered 7.5 mg of testosterone over the course of 24 hours.  However, as I mentioned earlier, the patches just did not agree with my skin and caused painful reactions.  I quickly decided this method of testosterone delivery was not going to work for me and returned to my endocrinologist and met with her nurse who taught me how to self-inject testosterone into a deep muscle.  Iíve been injecting myself ever since and started roughly in April 1996.  Between April 1996 and June 2018, I have given over 800 Intramuscular (IM) injections.  In early June 2018, I began seeing the same endocrinologist at Johns Hopkins again and she felt as though I should begin self-injecting a subcutaneous injection of a smaller amount of testosterone every week.  Though I wasnít sure it was the best course of action, I went along with her recommendation and it has been doing quite well.

At the time of my diagnosis, there were few types of testosterone therapy available.  Now in 2018, there are long and short acting testosterone injections, the Androderm patch still exists, there are various types of gel available, as well as a sublingual pill that is placed inside of your cheek and dissolves.  There are pellets that are surgically placed into a delivery mechanism under the skin and they slowly get used over a 6-month period of time, before more pellets are surgically implanted into the device again. All of those methods Iíve listed are available in the USA.  There are a few additional types of Hormone Replacement Therapy (HRT) available outside of the USA, which include oral medication.  A USA based pharmaceutical company is working to produce oral medication that does not pass through the liver and would be a viable medication for those who arenít able to use the alternatives.

The usual age to start the treatment is around 11-13 years old. The later that one starts hormone replacement therapy, the more problems that can exist. However, being the difficulty in diagnosing Klinefelter Syndrome, as well as the expense involved in having a Karyotype and/or Chromosomal Analysis done, some people, like myself, did not find out until later in life and did not start Hormone Replacement Therapy until later in life. For me, it would have been great if I could have found out about Klinefelter Syndrome and started on testosterone about 10 years earlier, but thatís just the way it went. Plus, there is no guarantee that the symptoms I described earlier would have helped even with the onset of a normal testosterone level. The currently available research is not conclusive that any of the learning or behavioral problems would have been any different if I had been treated earlier.

Three months after my diagnosis, and learning about the condition and being on testosterone therapy, I attended my first regional support group meeting.  It was truly eye-opening! I met the organizer of the support group in person after speaking with him literally moments after receiving the diagnosis by phone, and two other adult men with the condition.  Being in a room with others who had a similar variant of the condition, was definitely amazing.  Meeting families with children, and a world-renowned physician who had extensive knowledge about the genetic condition was very helpful.  Though I was nervous and still on the shy and reserved side, I went into the meeting and had a nice time interacting with everyone I met.

After my diagnosis, starting on testosterone therapy, and attending my first support group meeting, my life quickly started to take shape.  I was getting out of my introverted shell that had gotten me through much of my first 25 years of life.  The days of disappearing into a crowd and taking an absence in a two-and-a-half-hour college class because I was too afraid to come up to the board to answer questions orally in front of my class were over!  I was finally ready to move on to bigger and better things.

Four months after my diagnosis and about a month after that support group meeting, I found a position as a Software Quality Engineer near Boston, Massachusetts.  I connected through a relative to his friend and interviewed and was hired for my first real job after completing my Bachelor degrees.  Though it was my first ďrealĒ job after college, I had been working part-time since I was 14, in a variety of legal offices, a deli, a fast food restaurant, a chamber of commerce and had started my own typing service side business in 1989. I kept my business going throughout college and just as I started my first ďrealĒ job after college.  I wasnít sure how I would enjoy being a Software Quality Engineer, but knew that I would learn a lot and have some on the job training, since this was not part of my field of study.  However, I have always been involved and interested in computers and this job was right up my alley.  Plus, having a typing service involved being heavily detailed oriented, which is also a plus when dealing with quality control and quality engineering.

It was also during this short period of time since my diagnosis where my mother had been diagnosed with a non-cancerous, but aggressive brain tumor, a cousin was also diagnosed with a malignant form of cancer, and I was now dealing with both of those personal things while learning about my Klinefelter Syndrome/XXY diagnosis.  Prior to starting on testosterone therapy, any one of those things would have sent my life into a tailspin, but now I was able to deal with all three and working to move forward in my life.  Things had certainly taken shape with this diagnosis in a short period of time and I was really taking my life into my own hands.

I accepted the job offer near Boston, Massachusetts and found an apartment to rent in the area near my new job and in July 1996 moved and set out on my own.  Though I matured quickly with a combination of my testosterone and having to negotiate being completely on my own, I felt good about my life at the end of the day.  I did determine that I was still in need of Klinefelter Syndrome support.  At the time, I knew of only one other adult with the condition in my new area.  There wasnít a support group or support network in the area, as there had been in Silver Spring, Maryland. 

So, shortly after moving to Burlington, Massachusetts, I took off and flew to Seattle, Washington and attended my first national Klinefelter Syndrome conference held at a hotel in Bellevue, Washington, a suburb of Seattle over the course of a long weekend.  I met the founder and executive director of Klinefelter Syndrome & Associates (KS&A) a national organization founded in 1989. I was naturally shy and quiet as this was a new environment and situation for me.  Though sitting with 40 adult Klinefelter men was unbelievable. Sharing our lives and similarities was the highlight of the conference for me.  Many of the men were diagnosed later in life as I was and we shared many things and commonalities.  We talked about many likes and dislikes that we all felt defined us.  The discussions brought us closer together and made it feel like a family gathering. I believe this is one reason I still regularly attend national conferences whenever they are held because itís getting together with the people who have this condition and sharing together is very important for all of us.  I feel like this is my second family and social media has brought us closer together and we can share, but it is different being in person and being together.

I did sit in on a session for starting a support network while at the conference.  This was very important to me as I needed to build up a new network of support in the Boston area.  I still needed support and this was an opportunity for me to find other men and families in New England and build up a support network for them, as well as myself.  Since it had only been about 6 months since my diagnosis and I still needed support, I returned to my apartment and the Boston area with a mission to build a support group from scratch and have it evolve into a positive environment for everyone in need.

After returning from the conference and getting back to my new job, I started working towards the first group meeting.  I planned it for early November before the cold, winter weather came.  I found facility, and planned the meeting, and the national organization send out a flyer advertising the meeting and getting myself organized.  Having never planned or organized anything in the past and never being a leader, I was a little nervous taking on this new role and project.  The first meeting was a packed house and more than I expected.  I had prepared an opening presentation and tried to model this group similar to the way I had seen at my first support group meeting. Though I was nervous and felt it inside, the presentation came across very well and everyone in attendance was thrilled that there was finally a support group to connect with others and to get information about this condition for themselves and their sonís. I was nervous because I was still learning about the condition and myself and guiding this group from a leadership perspective was a foreign concept.  I was anything but a leader for the first 25 years of my life.  I would have just as easily followed a friend off a cliff, had he been willing to be my friend, so this was a completely new situation for me.

On the second Sunday of November 1996, I convened the first ever Boston Area Klinefelter Syndrome Support Group meeting.  We had 50 people in attendance and grew out of the classroom space I had reserved for that first meeting.  The families and adult men who came together were so grateful for the support network that I developed in New England.  It was a group many of them had wished for, for many years. At the end of the first meeting, those in attendance were already asking about a second meeting in the spring and if we could have a speaker and if this could continue.  I was overwhelmed by the support and feedback and knew I had made the right decision to start this network.  Though built it out of a sense of selfishness and still needing support, I realized that I provided a place for everyone to get that support and that was a great accomplishment.

By the second meeting in the Spring of 1997, we had outgrown the classrooms and moved to the auditorium and had 90 people in attendance.  The support group had officially taken off.  In 2018, this group still exists with other adults and parents handling the organization and planning, as Iíve been out of the Boston area since the early part of 2000. Happy to have started this support group network both for reasons of needing the support myself and also seeing the true need for others, as well.

Over the years I was directly running that group between 1996 and early 2000 we had very successful meetings.  In 1998, we started having two-day full weekend mini-conferences, where I was able to get special hotel rates and meal rates at local hotels and restaurants to support the group meetings and offer places for out of town attendees to visit.  Even when I was out of the area for a year in the 1997-1998 timeframe, I was still able to organize and get up to the area to run the meetings.  It was about that time that I knew this group would continue and had enough stability to continue growing and stay on track.  Though I am still surprised that 20+ years later the group still has a regular following and regular attendees.  The group is still having twice a year meetings and I am so proud that it has continued as it has always been needed.

I truly believe that I received the benefit of the support I needed for my recent diagnosis because of the way I saw others getting the help they needed.  They supported me and my efforts and provided support to keep me moving forward.  This signified to me how fortunate I was in having the ability to plan, organize and follow-thru with something that had so much potential and gave me the opportunity to lead and become a leader.

My life was now headed in a good direction.  I was no longer this quiet, shy, reserved person, I became a leader almost overnight, I was no longer just following others.  I was now living my life, learning about my condition, helping others, teaching others, giving presentations locally and nationally and being asked to speak about my life and living with Klinefelter Syndrome. 

After a year working in Software Quality/Test Engineering, I was bit by a big bug that told me I should pursue genetic counseling or counseling/social work as a career because I was working with and helping so many people with the condition, that it was just a natural way of moving forward.  Diagnosis with this condition basically was like turning lemons into lemonade.  I had a path forward.  I knew I could move in this direction and change other peopleís lives.  So, I left the Boston area, picked up and moved back to Baltimore.  I found a Software testing position in that area and I registered and enrolled in classes for the Fall 1997 semester in a Masterís program in Counseling Psychology at Towson University.  I was intent on taking night classes in counseling while working towards my Masterís degree and working full-time.  I determined that it was a great way to give back and help others and make a difference.  I was relatively happy in software engineering, but knowing I had this gift in helping those with Klinefelter Syndrome to understand about their lives, receive an early diagnosis and succeeding in life earlier than I ever was able to do.

The first thing I noticed was it was much easier for me to concentrate and easier to study and take notes and take tests and it came easier being on testosterone therapy.  It was easier as well since I had perfected my learning compensation strategies.  I completed three classes, one in the first semester and two in the second semester, all while maintaining a 4.0 GPA and working full-time.  I was enjoying the classes, but still wasnít completely sure I should go into this field. 

I still maintained running and organizing the support group in the Boston area.  I still attended group meeting in Silver Spring, MD when meetings were held.  I began assisting other people in their local cities to organize support groups for themselves and other people in their locale, as well as internationally.  I generally flew out to those meetings in Atlanta, Denver, Seattle, and drove to New York, Philadelphia and other areas to attend and support the new groups being formed.  It was so important at that time to bring people together since the internet was still in its infancy stage.

It was about that time when I realized that Klinefelter Syndrome as a whole needed to have a toll-free support line where people could leave messages and get return calls to inquire about support, education and advocacy needs.  I found and solely paid for the toll-free support line for more than ten years.  Though it did not ring directly to me or through a cell phone, I got notified via email when a message was waiting for me.

At the first support group in Spring 1998, in Aurora, Colorado, a suburb of Denver, the attendees who were there challenged me to come up with a set of relatively common questions and answers that most people were looking for at that time.  Instead of doing that, I worked on a project with another XXY and we created a video about the basics of living with Klinefelter Syndrome.  It was a stretch as we were very formally dressed and read it almost as a script.  We didnít memorize it, didnít have a teleprompter for our usage and the video was shot once and we didnít have the ability to modify and redo our efforts.  It was a one-shot deal and though it wasnít the best, it was certainly the first and at least something to educate the public and provide information about the condition and answers to the most common questions.

It was also at this time when I developed and published my Klinefelter Syndrome Support, Education and Information website.  Initially developing it through my internet service provider and then in early 2000 purchasing KlinefelterSyndrome.org domain name, where my website has been housed ever since.

At the time of my website being published, there was only one other website that existed with Klinefelter Syndrome information and that was the website of KS&A.

After completion of my second semester in the graduate program, some of my former co-workers in the Boston area joined a new company and urged me to consider coming back.  They were working on a really cool program and thought I would be ideal for one of the roles.  Though I was happy in Baltimore and happy working towards my degree, the company succeeded in me returning to the Boston area in October 1998.  A raise, a signing bonus and paying for my move in full was incentive enough.  Plus, I missed the comradery of the group of friends I had made at work in the year I worked in software engineering.

From my initial venture within the support network, I was also building up comfort with talking to and counseling people with the condition or talking to families with young kids and especially to parents who had received a prenatal diagnosis.  Between starting that first support network in Boston through present day, 2018, I have helped and spoken with thousands of families and individuals.  Assisting others individually, in a group and through groups and conferences has been some of the most rewarding work of my entire life.

I have always felt that parents who are finding out prior to the birth of their son or parents of infants or young children are very lunch.  When I talk to parents, the first thing I tell them is how lucky they are to find out now.  They ask me why and I tell them that there is so much they can do to help their child have a great life.  Some parents do not find out until their son is much older and are not able to help them lead the best life possible, nor are they able to understand why they had certain problems growing up.  This was my case; my parents never knew why I acted up at times while growing up.  They never knew until my diagnosis occurred. 

Those of you finding out now, can help! You can make a difference!!

I have frequently been asked by parents over the past 22 years, when is the right time to tell my son about Klinefelter Syndrome and some of the issues surrounding their diagnosis.  I generally tell them that their son probably already knows, he may feel awkward or different from his peers.  He may have learning differences and may not be able to express how he feels or his interaction between his classmates and himself.  My best advice to parents is from my heart and the way I felt growing up.  It is to be honest with your son about what he has.  Tell him in terms and ways he can understand and only so much information that he can handle at his age.  I could sense as early as four or five years old that something just wasnít right about myself.  I had a feeling in my gut that I tried to let go of, but it always followed me, at least until my diagnosis occurred.

During the time I was living in Baltimore from July 1997 through October 1998, and while helping with the Philadelphia support group, I met a woman who was in the process of getting divorced and had a son born with Klinefelter Syndrome/47XXY.  She and I met initially when I was assisting KS&A with a booth at an American Speech Language and Hearing (ASHA) national conference in New Jersey.  I needed assistance with three days of conference events and educational professionals at that booth.  She and I talked about Klinefelter Syndrome there and discussed her son and I with regards to the condition.  We continued to visit with each other at support group meetings in Philadelphia, New York, and Silver Spring, MD and became friends.  In the Summer of 1998, she and I both attended the national conference in Torrance, California.  We became closer and developed a more intense friendship that started to become more.

In October 1998, I found an apartment in Chelmsford, Massachusetts, as my job would now be in Westford, Mass, which was a far Western suburb in the Boston area and pretty close to the New Hampshire border.  I started working again with former co-workers as something above a Junior test engineer with some experience under my belt and some knowledge of what I was doing and my goals with testing going forward.  This position put me with a new team and though it was a new experience and change, I didnít feel as nervous this time.  Maybe it was because I wasnít truly new or maybe testosterone therapy was significantly helping me to feel calmer in my new role.  In any case, it was a welcome feeling being back in the area.

At the 1998 national Klinefelter conference, Baltimore, Maryland was chosen as the next city for the 1999 national conference.  My mother and I were designated as the chairpersons for that conference.  She and I put our heads together and started planning for the conference the following year.  Meanwhile, I was moving to the Boston area again, we were still very much in the early stages of conference planning with a tight budget that was never fully disclosed by the national organization.  We found a downtown Baltimore hotel, planned the conference over the Fourth of July weekend in 1999 and away we went.  It was an amazing celebration with many wonderful speakers with over 200 attendees. This was the largest attended conference to date and the 10th anniversary of the founding of KS&A.

During lunch on the first day of the conference, Dr. Harry Klinefelterís son, Stanard, gave a presentation with personal perspective of his father.  Since this conference coincided with it being the 10th anniversary of the KS&A organization, it was appropriate to have Mr. Stanard Klinefelter here to present family information about his father Ė whose name is synonymous with the condition we share.

The 1999 national conference was an amazing accomplishment that my mother and I worked on tirelessly for many months and all came together as a wonderful event and successful compilation of our efforts. 

It was also at this conference, where I started dating a mom whose son was diagnosed in utero with 47XXY before he was born.  She was someone who had assisted me at the ASHA conference in Fall 1997 and where we had subsequent interaction at the Philadelphia, New York, and Silver Spring area support groups.  We had our first date at that conference, on July 4th as we watched the fireworks lighting up the sky from above.

Dating at that point was fun.  I hadnít had a serious relationship since I broke up with my college girlfriend of five years early in 1998.  This mom and I dated for about six months before I proposed to her in early February 2000.  She and I had a lot in common and being a nurse, she was as interested in helping others with the condition as I was.  In April 2000, I left my software engineering job in Westford, Massachusetts and moved to NE Pennsylvania near Allentown to move in with my fiancť and her two children, a six-year-old son and three-year-old daughter.  Moving in to a ready-made family was something of a challenge and something I wasnít prepared for in a lot of ways.  I gave myself 19 months to get used to living with her and her children, working in software engineering and developing as a family, in the hopes to marry and have a long life together.   

We married in October 2001.  We both continued our assistance in the Klinefelter community with prenatally diagnosed families and within our own community.  She and I organized a regional support group in the Lehigh Valley of Pennsylvania, close to where we were living.  The support group developed nicely, but unfortunately after we moved to Northern Virginia for employment purposes in late 2002, the group disbanded and did not continue forward.

As I learned, marriage and having a family is partnership and isnít easy to maintain a marriage while you and your spouse are working full-time and working to develop your relationship, as well as the kidsí lives.  I married into a ready-made family.  Our relationship frequently had to take a back seat to the needs of the kids, their education, IEP meetings and educational support for both of them in their own ways.  Both she and I still had our involvement at national conferences and at the regional meetings, where both of her children attended and made new friends.

Just before our wedding took place, I was laid off from a software testing position in the Allentown area.  The layoff was due in part to September 11, 2001, that took place three weeks before our wedding.  

My mother and I again chaired a national Klinefelter conference, this time in Philadelphia in July 2001, for the newly formed American Association for Klinefelter Syndrome Information and Support (AAKSIS) organization.  Though we were not married yet, an engagement party was held in our honor as the conference ended that Sunday afternoon.

Marriage for me was an experience.  It was certainly something to get used to, and even though I had moved in 19 months before we actually got married, it was still a huge adjustment that I thought I was ready for.  We both still did Klinefelter support for primarily families/couples receiving a prenatal diagnosis.  We continued attending support group meetings and national conferences, because frankly thatís where we met and developed our friendship, relationship and then marriage.  We attended national conferences in 2003, 2004, 2005, 2006, and 2008. Between 2009-2015, our children were in high school and had many activities that we as parents were involved and volunteered in.  From marching band to concert band to orchestra, crew and field hockey, we were all over the place in and out of the high school almost on a daily basis.  Though still involved with Klinefelter Syndrome at an armís length, these activities took up a great deal of our time.

Our marriage was solidly good for the first 8 years, but then communication decreased and my anger which had been present for so many years, really started to take its toll on the marriage. I was unhappy in many ways.  I wasnít sharing my feelings, partially because I didnít know how to express them properly.  Eventually our fighting got so bad that I needed to act and after 15 years of marriage I moved out to separate myself from the pit of anger.  At that time, as I mentioned earlier, I took an Anger Management class to start working through the unbelievable anger that had caused so many issues throughout my life.  I needed to understand and work through the anger because it was ruining aspects of my life.

Unfortunately, the damage was already done and far from being fixed.  I ultimately after five long months of couples counseling decided to split permanently and dissolve the marriage through divorce.  Though marriage is a partnership and needs to evolve together through good communication and working at it, I know a fair share of the responsibility for the break was because of me and my anger issues and also sometimes because of the communication breakdown.  I had and still have some expressive issues.  Trying to talk about my feeling and how I feel and putting that into words has always been difficult and I have not always had good success.  When angry or having an argument, I was frequently not able to use my words well and sounded more like a child having a tantrum as the anger was clouding my mind and my judgment. 

As I rewrite my story now in August 2018, I have been living alone for almost 2 1/2 years and have been officially divorced for just over a year.  I am certainly enjoying single life again.  My sweet dog and I live together and she is the best roommate!  Youíll see pictures of her and I in this brief look into my life and my story.  I have certainly reflected back on my life both before and since the diagnosis have occurred.  When she and I originally started dating, I felt like I was dating and then married my best friend.  I had hoped it would last forever and the friendship would remain throughout, but a bad ending to the marriage and a bitter divorce ended all hopes of that happening.  I think losing the friendship is truly what I regret the most in the end. 

I am still working as a software test/quality control engineer and my career has now spanned 22 years in the same field.  I now primarily work as a government contractor, and I still test and break software and thatís what i get paid to do.  I enjoy my job about 80% of the time and thatís satisfying.  When I get tired of it, thatís when I know itís time for a change and move on to a different company or contract.  Though I will likely continue in this field, there are some other technical components that I will likely learn and add to my repertoire of knowledge to use between now and retirement.  I did forget to mention that I am almost completely self-taught in computers and IT.  As mentioned, I earned my Bachelor degrees in Business Administration and Sports Management.  I started hacking away with computers in the early 1980s and just built up my knowledge throughout.  As already mentioned, I started my own business at 19 years-old and ran a typing service as the owner and sole employee from September 1989 through September 1996.  I specialized in term papers, thesis, legal reports, legal and medical transcription, marketing flyers and resumes.  I was a good option for quick and inexpensive service at a time before many people owned personal computers and before the internet became what it is today.

Over the past 22 years since my diagnosis, I have completed just about everything that I have been able to do for this community.  I have helped to start more than a dozen regional support groups, about a half dozen internationally.  Have co-chaired two national conferences, and presented at many more.  I have been an intricate part of both KS&A as a regional director/coordinator, support group leader, conference coordinator and part of AAKSIS as a founding board member and many other hats it takes to start a brand-new national organization from scratch.  I have been asked to give presentations at regional and national genetic meetings, and American Speech, Language and Hearing Association (ASHA) meetings.  Have exhibited at a number of regional and national genetic conferences for both KS&A and AAKSIS.  I have been able to talk to many specialty providers about Klinefelter Syndrome/XXY and how it affects and manifests itself so they can take that back to their practices and help kids and others who come through their doors and need their services.  My ex and I regularly brought the condition to light in the school system our son attended so they would know about it to help other kids in similar situations.  I have appeared on television and in print.  Locally on the news in Baltimore, Washington and Boston and through a Public Broadcast System (PBS) 1990s show called HealthCast, which featured a segment about Klinefelter Syndrome which appeared in September 2001 and then again on their special Christmas episode highlighting the most watched episodes throughout the year.

As mentioned earlier, in the Summer of 1998 and at the suggestion of members of the Denver support group, I developed, produced and created the first video presentation about Klinefelter Syndrome.  Though it helped a number of people, thinking back as to how it looked, it was a pretty comical video in the way it was done.  Maybe Iíll eventually put it up on my website for all to see.

Speaking of my website, I have had one for Klinefelter Syndrome since the early part of 1998.  I built it myself, one page initially and now it is a set of 108 pages all linked together with little animation and fanfare but providing necessary information to those who need it.  It is still utilizing 1998 technology; however, I am in the process of updating it to use a newer technology and standard, something where I can add some video, audio and animation and improve the content.

I am still working on a book, an autobiographical compilation of my life.  Somewhat similar to ďmy storyĒ that I am updating right now!  Unfortunately, some things have gotten in the way of finishing and likely self-publishing and now with a dissolved marriage, many sections have to be completely revised before continuing forward. No fear, though, the book will get completed after the website update and things need to take precedence and move forward in conjunction with other projects being finished.

Iím not trying to gloat with all of the things I have accomplished since my 1996 diagnosis with this somewhat rare, and somewhat difficult to diagnose condition. I simply jumped in feet first after I was diagnosed partially because I needed support, but mainly because I wanted to help others so that they didnít have wait 25 years or longer to receive a diagnosis.  Plus, as I learned while attending my first support group meeting about three months after my diagnosis, the abortion rate was terribly high, something like 80% terminated pregnancies because of this condition.  Doctors and geneticists were giving out old, scary and incorrect information.  This is certainly not generally a condition for which one should consider terminating a pregnancy because it can be mild and manageable and with a growing support network, it has grown in leaps and bounds in the past 22 years.

Someone recently told me that this diagnosis has made life matter for them.  That they are now able to see a meaningful purpose for their life to be lived and to help others with this condition not feel alone and help them move forward.  I feel the same way, its why I got involved as quickly as I did.  My parents tell people that I have ďturned lemons into lemonadeĒ by getting involved.  They are so right! I frequently have people come up to me at conferences and say, you are so wonderful being there for me and my son and family.  I just see it as a regular part of my life and donít see myself as special for this reason.  Iíve just decided to give back, help others and help as many people as possible who live with Klinefelter Syndrome/XXY.

I have been involved with others who have also jumped in and have become an effective force in improving awareness and knowledge and improving positivity with the condition.  People like Ryan Bregante and Kelsey Maffei, Emily Waddie and Samuel Pierce and others who are following their lead to continue a strong movement of awareness and understanding about the condition.  For a long time, I felt like I was one of only a handful to be strongly involved and working to a better understanding of this condition and bringing people together and expanding the network, but the four individuals mentioned above, as well as many others are helping to bring light to the condition. I look forward to continued involvement with all four of them and many others.  There are many others along the way who have been instrumental in working and helping this condition to become better known including Ed Jensen, Vaughn Hambley, Robert Grace, Eric Grandin, Robert Shelton, Renee Beauregard, Jim Moore, Melissa Aylstock, Roberta Rappaport, Margaret Garvin, John O'Toole, Grace Costa, Dan Becker, and many others.

With some of the things mentioned that I have done for the community, it has been because Iíve wanted to help as many people as I could and especially the younger generation to not have to go through a lifetime of concerns or misdiagnoses or wondering, why me!  Iím glad there is a strong group of people in this community interested in helping to raise awareness and take the message around the globe.  Though I had times where I felt a little burnt out over the years with getting and staying involved, I recently have a newfound sense of spirit and energy to work even harder to continue helping and giving of myself to the organizations and the people who need us.  Iím still balancing out my life with work, Klinefelter volunteer work, spending quality time with my dog, single life/traveling, redesigning my website and completing my book. 

For everyone reading this story rewrite, I apologize about the length.  I wanted to make this more complete version since I have the ability to look back and not be typing this as things happen.

I expect parents and adults with Klinefelter Syndrome or just XXY are looking for initially is some compassion and empathy, two things that were not given to me by my physician just after my diagnosis.  I expect they will also be looking for confirmation and some, especially the parents receiving a prenatal diagnosis, will be trying to decent if they should abort the pregnancy.  Even now in 2018, the abort rate for parents finding out prenatally is much higher than it should be.  It doesnít need to be this way and shouldnít be.  Klinefelter Syndrome, or just XXY, if one is diagnosed before puberty, they may never develop the set of symptoms that Dr. Klinefelter identified as being a part of the syndrome, and may simply just be XXY or some variation of that. Klinefelter Syndrome isnít something that should be looked at, at a dreaded condition.  Look at some of the positives of my life within ďmy storyĒ. I urge the parents reading this and trying to decide, to get the correct facts and information before deciding.  In my honest opinion, my answer is similar in 2018 as it was in 1998, I believe that aborting a baby being born XXY, is wrong.  There are far worse conditions out there where deciding to abort could be right, fortunately Klinefelter Syndrome or XXY is a manageable condition. 

I am here, willing to talk to anyone, both one-on-one and in a group situation about Klinefelter Syndrome and my life living with it.  I am willing to talk to you via email, on the telephone or in person.  As you can see, I am not shy about having this condition.  I was born with it, Iím not ashamed that I have it, and instead I thrive on it as I wouldnít be the person I am today without receiving this diagnosis.  Iíve lived a great and successful life and will continue to do so regardless of the fact that I was diagnosed with this condition later in life.  I have had most all of the symptoms at one time or another in my life and have gotten through and done very well.  Iíve done what I needed to do to succeed.  I never wanted help after high school because I always believed I could succeed on my own.  Figuring out my compensation strategies has made the difference in my life.  I am one who has survived and have made my life and successful by giving back and helping others who have this condition.

Please feel free to contact me at the following email address: sschwarz13@gmail.com and I will be back in touch with you as quickly as possible and we can arrange a time to talk on the phone, or, if we are close enough in proximity, arrange an in-person meeting. 

I hope this has given you a little perspective into who I am and what Iím all about.  If you have any questions or if I can be of some help to you and/or your family, please donít hesitate to contact me.  I would be more than happy to talk to you about anything Klinefelter Syndrome/XXY related and help and assist you in any way I can.  If you are looking for support group materials, please go back to the main home page of this website and view the support group of your choice.  Please feel free to contact me at any time.


July 1999
29 years old

 1971 - 1 year old

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Last updated on August 18, 2018