Living with Klinefelter Syndrome: Part 9
As I rewrite my story, in September 2019, I lived alone for over three years and officially divorced for two years. I am undoubtedly enjoying the single life again. My sweet dog and I live together; she is the best roommate! You’ll see pictures of her and me in this brief look into my life and story. I have reflected on my life before and since the diagnosis 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 post-divorce. But a lousy ending to the marriage and a bitter divorce ended all hopes of that happening. I think losing the friendship is genuinely what I regret the most in the end.
I am still working as a software test/quality assurance engineer. My career has now spanned 23 years in the same field. I now primarily work as a government contractor, and I still test and break software, and that’s what I get paid to do. I enjoy my job about 80% of the time, and that’s satisfying. When I get tired of it, I know it’s time to change and move on to a different company or contract. Though I will likely continue to work in this field, there are some other technical components that I plan to learn to add to my repertoire of knowledge. I did forget to mention that I am almost entirely self-taught in computers and IT.
As mentioned, I earned my Bachelor’s degree in Business Administration and Sports Management. I started hacking away with computers in the early 1980s and built up my knowledge. I started my business at 19 and ran a typing service as the owner and sole employee from September 1989 through September 1996. Specialized in term papers, thesis, legal reports, legal and medical transcription, marketing flyers, and resumes. It 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 23 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 USA support groups and about a half dozen internationally. I have co-chaired two national conferences and presented at many more. I have been an intricate part of KS&A as a regional director/coordinator, support group leader, and conference coordinator.
A founding board member of AAKSIS and many other hats it takes to start a brand-new national organization. I have been asked to present at regional and national genetic meetings and American Speech-Language-Hearing Association (ASHA) meetings. Exhibited at several regional and national genetic conferences for both KS&A and AAKSIS. I have spoken with many specialists about Klinefelter Syndrome/XXY and how it affects and manifests itself. By doing so, they can take information back to their practices and help kids and others who need their expertise. My ex and I regularly brought the condition to light in our kids’ school system so they would know about it to help others in similar situations.
I have appeared on television and in print. Locally on the news in Baltimore, Washington, and Boston. On a Public Broadcast System (PBS) 1990s show called HealthCast. They 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. Although it helped many people, it was a pretty comical video in the way it was done. Maybe I’ll eventually put it on my website for everyone to see.
Speaking of my website, I have had one for Klinefelter Syndrome since early 1998. I built it myself, one page initially, and eventually, it became 108 pages linked together with little fanfare but provided vital information to those who needed it. It utilized early internet technology; however, I recently launched a new WordPress website which is much easier to update and manage.
I am still working on a book, an autobiographical compilation of my life. The book, when completed, will be a more in-depth version of “my story.” Unfortunately, time and availability have gotten in the way of completing it. I will likely self-publish, though, with a dissolved marriage, many sections have to be revised entirely. No fear, though; the book will get completed!
I’m not trying to gloat about everything I have accomplished since my 1996 diagnosis of this rarely heard-of and somewhat difficult-to-diagnose condition. I jumped in feet first after diagnosis, partially because I needed support; but mainly because I wanted to help others. It was essential to give back so no one would have to wait 25 years or longer to receive a diagnosis.
At my first support group meeting in May 1996, I learned that the abortion rate was very high for women receiving a prenatal diagnosis. Approximately 80% of terminated pregnancies when receiving an XXY diagnosis. Doctors and geneticists gave out ancient, scary, and incorrect information. Some of this information is still on the internet today!! This is not a condition in which one should consider terminating a pregnancy. The condition can be mild and manageable, and with a growing support network, it has grown in leaps and bounds in the past 23 years.
Someone recently told me that this diagnosis has made life matter to them. They can now see a meaningful purpose for their life to be lived and help others with this condition not feel alone and help them move forward. I feel the same way, and it’s why I got involved as quickly as I did. My parents tell people I have “turned lemons into lemonade” 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 child(ren) and family. I see it as a regular part of my life and don’t see myself as unique. I’ve decided to give back, help others, and help as many people as possible with Klinefelter Syndrome/XXY.
I have been involved with others who have also jumped in and become influential in improving awareness and knowledge and improving positivity with the condition. My friends Ryan Bregante, Kelsey Maffei, Emily Waddie, Samuel Pierce, and others are leading and building a solid movement of awareness and understanding.
For a long time, I felt like I was one of only a handful to be strongly involved, working toward a better understanding of this condition, bringing people together, and expanding the network. The four individuals mentioned and many others are helping to bring light to this condition. I look forward to continued involvement with all four of them and many others. Many others along the way have been instrumental in working and helping Klinefelter Syndrome become better known.
I have done for the community because I’ve wanted to help as many people as possible. Upon being diagnosed and learning about Klinefelter Syndrome, I wanted the younger generation not to go through a lifetime of concerns, misdiagnoses, or wondering, why me? I’m glad a strong group of people in this community is interested in helping raise awareness and take the message around the globe. I’ve had times when I felt a little burnt out over the years with getting and staying involved. Over the past two years, I have had a newfound spirit and energy to work even harder to continue helping and giving of myself to the organizations and the people who need us. I’m still balancing my life with work, spending quality time with my dog, Klinefelter volunteer work, dating and traveling, and completing my book.
For everyone reading this story rewrite, I apologize for the length; breaking it up into many parts makes it a lot more manageable to read. I wanted to make this a more complete version since I can look back and not be writing as things happen.
I expect parents and adults with Klinefelter Syndrome or just XXY are initially looking for compassion and empathy. Both of those things were not given to me by my physician just after my diagnosis. I expect they are looking for confirmation. The parents receiving a prenatal diagnosis will try to decide if they should abort their pregnancy. Even in 2019, the abortion rate for parents finding out prenatally is way higher than it should be. It doesn’t need to be and shouldn’t be this way.
If one is diagnosed before puberty, Klinefelter Syndrome, or just XXY, may never develop the symptoms that Dr. Klinefelter identified as a part of the syndrome. We may simply be XXY or some variation of that. Klinefelter Syndrome isn’t something that should be considered a dreaded condition. Look at some of the positives of my life within “my story.” I urge the parents to read this and decide what to do with their unborn son to get the correct facts and information before making that crucial decision. Honestly, my answer is the same in 2019 as in 1998. I believe that aborting a baby, being born XXY, is wrong. There are far worse conditions out there when 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 will talk to you via email, telephone, or in person. As you can see, I am not shy about having this condition. I was born with it. I’m not ashamed that I have this condition. Instead, I thrive on it! I wouldn’t be the person I am today without receiving this diagnosis. Although I was diagnosed later in life, I’ve lived a great and successful life and will continue to do so.
I have had most of the symptoms at one time in my life and have gotten through and done very well. I’ve done what I needed to do to succeed. I never wanted help after high school because I believed I could succeed independently. Figuring out my compensation strategies has made a difference in my life. I have survived and made my life successful by giving back and helping others with this condition.
Please feel free to contact me at the following email address: firstname.lastname@example.org. 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, arrange an in-person meeting.
I hope this has given you a little perspective on who I am and what I’m about. If I can help you and/or your family, please don’t hesitate to contact me. I would happily talk to you about anything Klinefelter Syndrome/XXY related. And can help and assist you in any way I can. Please feel free to contact me at any time.