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Living with Klinefelter Syndrome: Part 6

Shortly after moving to Burlington, Massachusetts, I flew to Seattle, Washington to attend my first national Klinefelter Syndrome conference. It was held at a hotel in Bellevue, Washington over the course of a long weekend.  I met Melissa Aylstock, the founder and executive director of Klinefelter Syndrome & Associates (KS&A).  The first national organization founded in 1989. I was very shy and quiet as this was a new environment and situation for me. 

I sat in a room with 40 adult Klinefelter men and that was unbelievable!!  Sharing our lives and similarities was truly 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 things 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. Getting together annually and visiting together and welcoming others is very important for all of us.  This is my second family and social media has brought us closer together, but it is different being in person and being together.

I sat in on a session for starting a support group while at my first 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 to build a support network for them, as well as myself.  It had only been about six months since my diagnosis and I still needed support. After the conference, I returned to my apartment and the Boston area with a mission and the tools to get it accomplished. It was time to build a support group from scratch. Hoping the group would have a positive effect and have it evolve into a positive environment for those in need.

After returning and getting back to my new job, I started working towards the first group meeting.  It got planned for early November before the cold winter.  I found a facility and planned the meeting, and the national organization sent out a flyer advertising the meeting.  Having never planned or organized anything in the past and never being a leader, I was a little nervous taking on this new 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. I was nervous and felt it inside. The presentation came across very well and everyone in attendance was thrilled that there was now a support group to connect with others and to get information about this condition for themselves and their son’s. 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.  Never having been much of 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 hoped for, for many years. At the end of the first meeting, those in attendance already were inquiring 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 I’ve 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 people’s lives.

So, I left the Boston area, picked up, and moved back to Baltimore.  Found a software testing position in that area and registered and enrolled in classes for the Fall 1997 semester. Started in a Master’s program in Counseling Psychology at Towson University.  I was intent on slowly taking night classes in counseling while working towards my Master’s 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 wasn’t completely sure I should go into this field. There was a better long term solution working in software engineering.

I still maintained running and organizing the support group in the Boston area.  Still attended group meetings in Silver Spring, MD.  Began assisting other people in their regional areas to organize support groups for themselves and other people in their locale, as well as internationally.  I sometimes 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 Aurora, Colorado, Spring 1998, those who were in attendance challenged me to come up with a set of a common set of 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 like a script.  We didn’t memorize it, didn’t have a teleprompter for our usage and the video was shot once and we didn’t have the ability to modify and redo our efforts.  It was a one-shot deal and though it wasn’t 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, now known as AXYS.

Continued in Part 7: Living with Klinefelter Syndrome

Back to Part 5

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