My name is Stefan Schwarz. I have Klinefelter Syndrome, XY/XXY mosaic and found out in February 1996 at the age of 25. Throughout my life before my Klinefelter diagnosis, my parents took me to many medical professionals to determine what my issues were. They knew that I had learning, social, anger and behavioral issues. But they couldn’t put their finger on it until my XY/XXY Klinefelter diagnosis occurred.
Initially my parents didn’t want me to tell people, but that lasted like a week. I still needed support and frankly the condition is not something I am ashamed of. I have it and there are way worse things in life.
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. I was very immature, had few friends and the friends I did have were traditionally either a few years older or younger than I was. I tended to hold on to my friends even past the time when our friendship deteriorated, for whatever reason.
With reading comprehension issues, auditory processing, very poor standardized testing, word retrieval, some slight memory retrieval, and no concentration. I graduated high school, 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 wasn’t a dumb kid, I was smart in my own way and I have found that a lot of it was that way because of how I was taught. Looking back the teachers just didn’t know what to do for me or how to help me to be successful.
I began college at a local community college near my parents’ home in Baltimore. Looking at my learning differences and realizing it was just part of life. Figuring out my compensation strategies to focus on my positives and strengths is what I did. My strengths work well for me, but may not work for everyone as they truly are individual based. For me I focus on HANDS-ON LEARNING, REPETITION AND VISUALIZATION. If I can see it, I can do it. If I’m shown something once, I can then do it again. Reading and re-reading a passage of text three times allows me to fully understand it and retain it for the future.
After graduating from the community college, while working part-time throughout, I earned an Associates degree in Business Administration. I then transferred to a very small Liberal Arts college, Colby-Sawyer College, in New London, New Hampshire and earned dual Bachelor of Science degrees in undergraduate and had started taking graduate classes in Counseling Psychology all before I had my Klinefelter Diagnosis.
I achieved honors several semesters in college, and missed graduating cum laude by 1/100 of a point. Colby-Sawyer College was my first experience being almost completely on my own, and roughly 500 miles away from home. It was a truly great experience —learning, socially, growing up, making new friends and really living my life.
Life wasn’t easy before my Klinefelter diagnosis. I certainly battled socially, educationally and behavior, especially my anger which tended to boil up inside of me. Often I exploded with volcanic like lava and harsh words towards people I loved and cared about. My parents took me to many psychologists and psychiatrists, and medical professionals in the Baltimore area, home of Johns Hopkins Hospital, and no one thought of genetic testing before my Klinefelter diagnosis actually occurred. Life after receiving my Klinefelter diagnosis was initially one where I was angry.
Becoming 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 Klinefelter diagnosis. We had been together for three years and we were planning to have children and a family and be together forever. But based on past friendships, as I’ve already mentioned, I continued it to try and make things work even though I had received this Klinefelter diagnosis. Eventually, we broke up and moved on to better things.
Gradually after the first couple of weeks, I began to accept the Klinefelter diagnosis and move forward and learn about the condition and look into myself and see what would have helped me and been different if the Klinefelter diagnosis had occurred earlier, say, in my mid-teens or earlier. I had started taking testosterone about a month after my Klinefelter diagnosis occurred. Because I was my primary care physician’s first Klinefelter diagnosis in his 20 years of practice and because he was only looking at my testicles initially to make sure I had two and didn’t really feel for the size until I came in with other symptoms.
I scheduled an appointment at Johns Hopkins with a top endocrinologist. He 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 Klinefelter diagnosis and limited treatment methods.
We decided together to start on the Androderm patches. Patches that delivered 7.5 mg of testosterone over the course of 24 hours. However, the patches were huge and you needed two of them. My body did not react well to the patches. I got daily rashes, skin irritation, wax-like effects when removing the patches. I quickly learned this method of testosterone delivery was not going to work for me and consulted my endocrinologist. A few days later I returned to her office and her nurse taught me how to self-inject testosterone.
For more than 22 years I have been self-injecting. Initially 1cc every 14 days, though my frequency has changed. From the initial 14 days down to 12, then 11 and then 10 days.
After my Klinefelter diagnosis and starting on testosterone therapy, my life quickly started to take shape. I was jumping out of my introverted shell that had gotten me through much of the first 26 years of my 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 (yes, this really happened)!. I was finally ready to move on to bigger and better things.
Within four months of my Klinefelter diagnosis. Shortly after starting my new job, I go word from my mother that she had a non-cancerous brain tumor. I was now dealing with both of these personal things while learning about my Klinefelter Syndrome/XXY diagnosis. I also attended my first support group meeting in the area, held by an XXY who I spoke with on the telephone just shortly after my diagnosis occurred.
It was a lot to take in all at once, but I was handling things better than I had ever in my lifetime. Before diagnosis and starting testosterone therapy, just one of those things would have sent me into a tailspin. But now I was dealing with all of them and actually moving forward with a real job, flying up to the area and finding an apartment with only limited friends or family in that area. I was really starting to make my life take shape and make it my own.
I moved to Burlington, Massachusetts the beginning of July 1996. Where I started work just before attending my first national Klinefelter Syndrome conference in Bellevue, Washington, a suburb of Seattle. It was there that I had my first huge awakening and being in a support group room with 40 adult men who had the same condition as I did was unbelievably eye-opening! Many of the men were diagnosed later in life as I was and we shared many things and commonalities. Especially with regard to some symptoms and learning differences. Though we talked about many likes and dislikes that we all felt defined us, the discussions just brought us together and made it feel like a family gathering. I think that is one huge reason I still regularly attend national conferences whenever they are held because it’s the camaraderie of seeing my friends again.
After the overall conference, I came back to the Boston ready to build a successful support network in that area. In reality it had been less than 6 months since my diagnosis occurred and I was still needing support from peers with the condition.
After returning from the conference, I found a site location and had basic idea how I would structure our meetings. Basic written information, some from my own minimal experience and some from the national organization. The organization would assist with mailing flyers to the region to help get this group off the ground. Though I had been shedding my introverted background, not fully out of my shell and still nervous about what to expect concerning giving an opening presentation and guiding this meeting from a leadership standpoint. I was anything but a leader growing up. In fact, to make or keep a friend, I would have followed that friend off a cliff. Only if it would have helped me socially.
In early November 1996, I held the first ever Boston Area Klinefelter Syndrome Support Group meeting. We had 50 people who attended and grew out of the rooms I had reserved for the first meeting. The families and adult men who came together were so grateful that a support network had been started in the area.
Over the next 4 years we would have successful meetings. Eventually a two-day conference where I was able to get special hotel and meal rates to support the group meetings. Incidentally, this support group/network still exists as of July 2018. They are still having regular twice a year meetings and I am so proud that it has continued as it has always been needed.
Continuing to work as a software test engineer in multiple companies and environments, growing and extending my career.
I started dating a mom who’s son also had a Klinefelter diagnosis and I ended up marrying her. Marriage for me was an experience. It was something to get used to, and even though I had moved in 21 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 families getting a recent diagnosis, especially those families who received a prenatal diagnosis. Attending the regional support group meetings and national conferences together in 2003, 2004, 2005, 2006, and 2008. Between 2009-2015 we had two children in high school the activities they did had huge parental volunteer responsibilities of which we both did our fair share coordinating high school marching band activities.
Our marriage was very good for the first 6-8 years. Ultimately after five long months of counseling together with her decided to split permanently and dissolve the marriage through divorce. Though marriage is a partnership and needs to revolve together through good communication and working at it. I know the responsibility for the break was because of my anger issues and also the communication breakdown.
My sweet dog and I live together and she is the best roommate! I have certainly reflected back on my life since my diagnosis and throughout my marriage.
I am still working as a software test engineer. My career has now spanned 22 years in the same field. I now primarily work as a government contractor. 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. Having taught myself everything about computers I know with very few online courses, I received my Bachelor degrees in Business Administration and Sports Management.
I starting hacking away with computers in the early 1980s and just built up my knowledge throughout. Then I started my own business at 19 years-old and ran a typing service as the owner.
Since my Klinefelter diagnosis, I have completed everything that I have been able to 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 other hats. I have exhibited at a number of regional and national conferences both for KS&A and AAKSIS and 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 practice and help kids and others who come through and need their services.
Having a website for Klinefelter Syndrome since the early part of 1998. I built it myself, one page initially and now it’s a set of 108 pages uniquely configured. It is still utilizing 1998 technology; however,
I simply jumped in feet first after my Klinefelter diagnosis because I needed support. I wanted to help others so they didn’t have to wait 25 years or longer to receive a Klinefelter diagnosis. Plus, as I learned while attending my first support group meeting about 3 months after diagnosis, the abortion rate was terribly high, something like 80% terminated pregnancy because of this condition.
Doctors and geneticists were and still are 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 (this was back in 1996 originally), 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 “turned lemons into lemonade” by getting involved. I frequently have people come up to me thanking me for being there when they needed it. I just see it as a regular part of my life and don’t see myself as special for this reason.
I’ve just decided to give back, help others and help as many people as possible who live with Klinefelter Syndrome/XXY.
I am happy Ryan and I are friends and he has this amazing website and is helping bring people together. And looking forward to working with him and supporting his efforts along with the others who have joined up to help and make the community larger and stronger than ever before.
I hope this has given you a little aspect into who I am and my Klinefelter diagnosis. If you have any questions or if I can be of some help to you and/or your family, please don’t hesitate to contact me.